usb 306/307 modem usb 308/309 modem 310u modem quick start

continued on p. 2

The latest point-of-care gadget: Pocket-sized ultrasoundsFEATURES

June 2010Vol. 17 No. 11

A HealthLeaders Media publication

June 2010 Vol. 16 No. 6

New on the ’net 5 ■ Rural Nebraska Healthcare Network readies for $20m fiber optic medical network

■ Cancer risks prompt doctors to try to lower imaging scan radiation

■ Robotic wheelchair operated by voice commands in development

Healthcare guide to the Internet

■ Lupus 10

■ Scleroderma 17

Site of the month 24 ■ The Scleroderma Research Foundation was founded by a patient-turned-activist named Sharon Monsky in 1987, when research for this disease was nearly nonexistent. Today, it is the leading nonprofit investor in medical research and therapies for scleroderma.

by Cynthia Johnson

Intel cofounder Gordon E. Moore’s 1965 prediction, known as “Moore’s Law,” stated that electronics manufacturers would be able to cram more components into smaller packages over time. We’ve seen this trend play out in the down-sizing of computers, audio systems, telephones, and now medical devices. The introduction of the ultrasound as a pocket-sized point-of-care tool is the latest example.

Ultrasound is a device that has been around for more than 50 years. But in the past two years, companies such as GE Healthcare and Siemens Healthcare have pushed the envelope by developing pocket ultrasound systems that weigh less than a pound, says Thomas L. Szabo, PhD, a research professor in the biomedical and mechanical engineering department at Boston University and the author of Diagnostic Ultrasound Imaging: Inside Out, a book that discusses the sci-ence and technology of diagnostic ultrasound. He suspects other companies will quickly fol-low suit.

“The new dimension here is point of care,” says Szabo. “Ultrasounds started as fairly large systems. The patients were brought to imaging centers. Then the systems got wheels and they were wheeled to the patient’s bedside. What we have now is a whole new development. The sys-tems are so small that they can be carried to the patient. This opens up a whole new landscape of applications.”

Users and manufacturers frequently compare the product to the ultimate physician go-to device: the stethoscope. Anthony N. DeMaria, MD, profes-sor of medicine in the division of cardiology at the University of California, San Diego, always keeps his GE Vscan handy and uses it as a tool to screen patients. “The huge advantage is that it’s a size that I can easily carry around with me,” says DeMaria. “I can put it in the pocket of my lab coat and it’s available all the time.”

Instant access to clinical dataPocket-sized ultrasounds provide instant access

to medical images of the inside of the patient’s


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body, such as muscles, tendons, organs, and other structures. Users say it allows them to screen patients to determine whether they need to order a traditional ultrasound.

“If I see some abnormality, I’m always going to move to the next step, which is a full echocardiogram,” says DeMaria.

hypertrophic cardiomyopathy during physical examinations. He’s also used it during appointments with prosthetic heart valve patients. Screening them helps him quickly determine whether the heart valve is causing the patient’s symptoms. “As a screening technique, it really complements the physical examination in a lot of patients,” says DeMaria. “The ease and availability of it have fostered use of the device, so if there’s any question, then it’s easy to do.”

“We see it as something that’s happening early on in the physical exam to give the physicians more confidence in their diagnosis or history,” says Al Lojewski, vice president and general manager of cardiovascular ultrasound at Waukesha, WI–based GE Healthcare. Lojewski says it can help physi-cians prioritize the patients who need ultrasounds. When faced with a two-week waiting period for an ultrasound, a physician can determine which patients are urgent and which ones can wait two weeks. “It gives them a better feel that the level of urgency is correct,” he says.

During emergencies, the device can provide instant access to much-needed data. DeMaria says he keeps the device handy when the emergency room calls him in for a consult. It enables him to determine whether a patient’s chest pain is heart-related. “If everything looks normal, then you can stop the emergency measures that usually accompany acute chest pain syndromes,” he says.

According to Szabo, pocket-sized ultrasounds also hold the potential to save a person who is having a life-threatening

Pocket ultrasoundscontinued from p. 1

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“�Ultrasounds�started�as�fairly�large�systems.�The�patients�were�brought�to�imaging�centers.�Then�the�systems�got�wheels�and�they�were�wheeled�to�the�patient’s�bedside.�What�we�have�now�is�a�whole�new�development.�The�systems�are�so�small�that�they�can�be�carried�to�the�patient. This�opens�up�awholenewlandscapeofapplications.”

—Thomas L. Szabo, PhD

Szabo says the device should be used as a screening tool instead of being used on every patient like a stethoscope. Physicians should use it to help diagnose patients who are experiencing certain symptoms, he says.

DeMaria uses the Vscan on a case-by-case basis. He has had success using it to diagnose patients with conditions such as



© 2010 HCPro, Inc. June 2010 MedicineontheNet®3

but this might not be true of pocket-sized devices whose users may have less training. “These pocket systems are in a slightly different category and a different use model,” says Szabo. “There’s a concern for either missed diagnosis or misdiagnosis.”

Companies have developed some training for new applica-tions of the technology, but Szabo points out that manufac-turers should develop and provide more.

emergency by determining, for example, where a patient is experiencing internal bleeding after an accident.

Have ultrasound, will travelThe origin of compact ultrasounds dates back to the

1990s, when the government funded research for small ultrasound systems that would be portable enough to use on battlefields. Since then, companies such as Sonosite and TeraTech have been developing portable, compact devices. Now, companies such as GE have made them pocket-sized.

Given pocket ultrasound systems’ price point and com-pactness, users can now apply them in a variety of other settings, including emergency rooms, rough terrain (e.g., on mountains or in space), and rural areas and underdeveloped countries that may not have immediate access to traditional ultrasounds or imaging centers.

“The indications for global healthcare are huge,” says Szabo. “There are so many regions of the world—and even the United States—where there’s literally no healthcare for hundreds of miles. You bring in someone with an ultra-sound system and they can help see things that were other-wise invisible.”

The application also holds potential to become a telemed-icine device, although Lojewski says GE doesn’t view this as one of the major problems the device will solve. Instead, physicians will likely use it for remote confirmation of a patient’s diagnosis.

The use of ultrasounds in telemedicine is of particular interest to Szabo. He says that an expert at a remote location could receive images, help pilot the device operator, and pro-vide his or her clinical opinion.

Training requiredGE is focusing its marketing of Vscan to primary care

physicians, Lojewski says, adding that other users of the device include hospitalists, emergency physicians, cardiolo-gists, obstetricians, and medical schools as part of their resi-dent training programs.

Although potential applications for the devices appear limitless, Szabo says the use of any ultrasound technol-ogy requires human understanding and interpretation. Traditional ultrasounds have trained operators at the helm who are using them for specialized applications, continued on p. 4

The GE Vscan Portal (www2.gehealthcare.com/portal/site/vscan) contains educational videos that provide instruction to users on topics such as where to place the transducer, what to look for, and problems they might encounter. But Szabo is skeptical that this will be enough training for this unique, new subset of ultrasound users. “The question is, can someone just look on a website and learn how to do this?” he says. “Most people don’t think so. Usually they need some hands-on training, especially to look for more specific diagnoses.”

In addition to training, the portal also enables physicians to view images on a larger screen. DeMaria says the images are larger and easier to measure, and he can make illustra-tions on them. However, he states that he isn’t a regular user of the portal and doesn’t find it critically important to his needs as a specialist who uses the device.

According to Lojewski, GE may one day include social media features in the portal, which could allow physicians to share information, images, and success stories.

Why less may not always be moreAccording to Szabo, traditional ultrasound systems provide

physicians with higher-quality images than their pocket-sized




feature. “In the beginning, I could recall every single patient I had examined and what the issue was,” he says. But he antici-pates that he soon will given the regularity with which he has started using the device.that he is using the device so the voice annotation feature.

Physician-friendly price point At less than $10,000, the Vscan’s price point seems to be in line with its potential customers given the contribution that it could make to a physician’s practice. However, insurers are not currently providing reimbursement for the use of portable ultrasound systems, which arguably may hamper growth of the devices, even though Szabo says they hold the potential to lower the cost of healthcare in many situations.

Lojewski points out that, like a stethoscope, GE does not expect insurers to reimburse providers who use the device. He likens use of the Vscan to tasks such as taking a patient’s blood pressure. What the device provides is better information to the physician in order to reassure patients on the spot.

Over time, as the devices are used, Lojewski says there will be clinical data to back up the usefulness of the prod-uct through the health economic studies that are already under way.

He also wonders whether data will show that the devices play a role in patient compliance with treatment plans. “Will a patient stay on their medication more if you’re showing them the image of something that you’re treat-ing?” he says.

Since the Vscan became available February 15, GE has been busy fulfilling product request orders and sending the devices to parts of the United States, Canada, Europe, and India.

Sales include users who are buying one device to try it out and users who are buying 10 devices and deploying them within their hospitals.

“It’s an exciting product, and I think we’re just opening up possibilities of using this with imaging and viewing imag-es on the Internet,” Lojewski says. H

Editor’s note: To learn more information about GE’s Vscan device, please visit the website www.healthymagination.com/projects/innovations.

counterparts. He says that in order to downsize the device, manufacturers have made some compromises regarding image quality and features, but he predicts that this will improve over time.

DeMaria describes the quality of the images as “pretty good,” but also states that it’s certainly not the same level of quality as what you’d expect from a full echocardiogram machine. “It doesn’t have all the capabilities,” he says.

But streamlining the device into a pocket-sized tool has its advantages over traditional ultrasounds. For example, the Vscan records images in JPEG and MPG formats, which are accepted by many applications, as opposed to the DICOM (Digital Imaging and Communications in Medicine) images that traditional ultrasounds use and that are not readily accepted by other devices. Physicians could send the Vscan’s files to another physician’s smartphone if a referral needs to take place.

“These are simpler, smaller files that you can move around more easily,” says Lojewski.

The device also creates WAV files through its voice anno-tation feature, which helps physicians document details about a patient’s ultrasound image. DeMaria has yet to use this

Pocket ultrasoundscontinued from p. 3

“�As�a�screening�technique,�it�really��complements�the�physical�examination��in�a�lot�of�patients.�The�ease�and�availability�of�it�have�fostered�useofthedevice,soifthere’sanyquestion,thenit’seasytodo.”

—Anthony N. DeMaria, MD

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RuralNebraskaHealthcareNetworkreadiesfor$20mfiberopticmedicalnetwork

The Rural Nebraska Healthcare Network (RNHN), which includes nine hospitals and clinics in western Nebraska, said it is finalizing the installation of a $20 million fiber optic medical network. According to a HealthLeaders Media article, the net-work uses funding from the Federal Communications Commission’s Rural Healthcare Pilot Program.

The RNHN will partner with Zayo, a Colorado-based provider of bandwidth infrastructure and network-neutral co-location services, to build the network. Other commercial tele-communications products will also be offered in underserved rural Nebraska.

Zayo is providing some funding for the project.

The proposed 750-mile fiber-optic network will span 12 counties in western Nebraska and will connect to national research networks such as

National Lambda Rail and Internet 2 in Denver.

RNHN expects the fiber-optic net-work project to launch this summer and for work to be completed in the fall of 2011.

Cancerriskspromptdoctorstolookforwaystolowerradiationexposurefromimagingtests

Doctors are exploring ways to reduce the amount of radiation ex-posure from medical imaging tests in light of renewed concerns about the risk of cancer, according to research presented at a radiology conference.

Radiologists have been working for several years to reduce unneces-sary exposure to radiation in children, whose growing bones are more sensi-tive to radiation than adults’, according to a USA Today article.

Vanderbilt’sMyHealthsystemgivespatientsaccesstohealthrecords

Vanderbilt University Medical Center’s MyHealth system, which launched about six years ago, is an example of what might be created on a larger scale as health providers try to give patients more online access to health records. The health portal, accessed with a username and password, began as an avenue for patients to send messages to doctors with whom they had appointments, according to an article in The Tennessean. It later expanded to include lab results, online bill payment, health tips, and more.

The site can be found at www.myhealthatvanderbilt.com.

Surgicalrobotexaminedininjuries

Wentworth-Douglass Hospital in Dover, NH, has been using the da Vinci surgical robot in several sur-geries where injuries have occurred. A Wall Street Journal article points out that the device, which uses four remote-controlled arms and a sophisticated camera, is typically used to make surgery less invasive.

As a small regional hospital, the facility has used the robot about 300 times in four years. Some say this is too little time for the doctors at the hospital to master it. One study published in the Journal of Urology found that a hospital needs to do at least 520 surgeries per year with the robot to bring its costs in line with traditional surgery.

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GenerationXtotacklechangingthehealthcaresystem

Paul Keckley, executive director of the Deloitte Center for Health Solutions, says members of Genera-tion X, or those born between 1965 and 1981, may be the group of con-sumers who will be able to prod the healthcare system into changing its ways, according to an article in The Wall Street Journal.

Along with their younger Genera-tion Y siblings, this group is “less satisfied with their health plans and care and they want information, under-standable prices, and connectivity through technologies,” a report from Deloitte says.

Usinggeneticteststospotandpreventheartproblems

Doctors are using genetic testing to identify and prevent heart problems

in patients who seem healthy but may be at risk because of a family history of heart disease. The tests remain controversial amid debate whether the information they yield will lead to improved outcomes and justify the

additional cost, reports The Wall Street Journal.

A study published in The Lancet about a healthy 41-year-old man with a family history of heart disease illustrates how genetic testing can lead to early treatment and pos-sibly stave off heart problems. The patient, an engineer, sequenced his own genome, uncovering variants that prompted his cardiologist to prescribe blood cholesterol–lowering drugs called statins.

FDAdealleadstorecallofU.S.infusionpumps

Deerfield, IL–based Baxter International is recalling its Colleague infusion pumps from the American market under an agreement with feder-al regulators that seeks to fix problems such as battery failures and software errors.

100iPadssettodeployatCaliforniahospital

Kaweah Delta Health Care in Visalia, CA, plans to deploy more than 100 iPad™ mobile digital devices within the next two months or so. According to a NetworkWorld article, healthcare employees will use the devic-es to look at x-ray images, EKG results, and various other patient monitoring programs. iPads are also able to perform typical office tasks, such as e-mail.

Nick Volosin, director of technical services at Kaweah, believes that the iPad, which sells for $500, can replace the standard laptop for many employ-ees, particularly home healthcare and hospice workers. Volosin also believes that it will boost efficiency by eliminating wasted time turning laptops on and off and charging batteries between appointments.

NashvilleMedicalTradeCentergetsfirstmajortenant

The Healthcare Information and Management Systems Society, the largest healthcare technology trade group, has agreed to lease 25,000 square feet or more in the proposed Nashville Medical Trade Center, a move the Dallas-based developer sees as a boost to the project’s credibility and its chances of success. According to an article in The Tennessean, the nearly 30,000-member society plans to use its space, a small part of an eventual 15-story medical trade center, as a showroom to demonstrate high-tech clini-cal systems and other products.

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The FDA said April 23 that the infusion pumps used to administer drugs and liquids were linked to more than 56,000 complaints of injuries, deaths, and malfunctions from 2005 to 2009, according to a New York Times article.

The company has been under a consent decree with the FDA since June 2006 that allowed the agency to require a recall of the pumps.

Diagnosticimagingtestsaccountfor57%ofallcancercostsinMedicarepatients

The cost of treating cancer has been going up, but the cost of imag-ing to diagnose and stage those with the disease is skyrocketing, says one report. According to a HealthLeaders Media article, imaging tests in cancer

care for Medicare patients account- ed for 57% of all cancer costs in 2004, suggesting that the study pop-ulation “represented the majority of cancer costs borne by Medicare beneficiaries.”

Positron emission tomography scans increased the most in each of six types of cancer studied, from an aver-age annual rate of 35.9% to 53.6% between 1999 and 2006. Bone studies increased by 6.3% to 20%, echocar-diograms by 5% to 7.8%, MRI from 4.4% to 11.5%, and ultrasound from 0.7% to 7.4%. The cost of all cancer care increased by 1.8% to 4.6% per year, but imaging grew by 5.1% to 10.3% per year.

The research can be found in the April 28 Journal of the American Medical Association.

Children’sMedicalCenterDallas,TexasHealthResourceshospitalscannowsharerecords

Patients of Children’s Medical Center Dallas who are seen at any of the 13 local hospitals owned by Texas Health Resources, Inc., will now have their health records instantly uploaded. Texas Health Resources and

Atonehospital,computerizedordersystemcutmortalityby20%

A new study suggests that using computerized physician order entry (CPOE) can cut mortality. The study found that at Lucile Packard Children’s Hospital at Stanford in Palo Alto, CA, the monthly mortality rate dropped by 20%, from just over one death per 100 discharges to about 0.7 deaths, according to a Wall Street Journal article. The authors estimate the CPOE system may have led to 36 fewer deaths over the 18 months that the system was studied.

MinnesotabasedParkNicolletlaunchesanonlinediagnosisservice

St. Louis Park, MN–based Park Nicollet Health Services will start diagnosing minor health problems such as bladder infections and allergies online using technology by Minneapolis start-up Zipnosis. The 12-month pilot begins May 1, according to a Minneapolis Star Tribune article.

Consumers can go to www.zipnosis.com and spend five minutes answering questions about their symptoms. Park Nicollet’s nurse practitioners will then suggest treatment or prescribe medication within an hour. The service is for non-emergency problems. The cost to consumers is $25, payable by credit card or debit card.

Zipnosis CEO Rick Krieger says the company’s goal is to be in four to six more states by the end of the year.

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Children’s Medical Center announced they can now electronically exchange medical information on a mutually treated patient, reports an article in the Dallas Morning News.

The technology is made possible through a secure health information exchange product provided by Verona, WI–based Epic Systems Corp. It is the first such exchange in the Dallas–Fort Worth area.

Computerizing medical records was a component of last year’s $787 billion stimulus package, which reserved $45 billion for hospitals and physicians to adopt electronic health records.

JudgerejectspleadealonGuidantheartdevice

A federal judge in Minnesota has rejected a plea agreement between the federal government and Guidant Corporation, saying that the deal did not hold the company sufficiently accountable for an episode in which it

sold potentially flawed heart defibril-lators. The deal called on Guidant to plead guilty to two misdemeanors and pay a $296 million fine, described as the largest levied against a medical device company, according to an article in The New York Times.

The case results from disclosures in 2005 that Guidant did not alert doctors and patients that some of its defibrillators had a defect that might cause them to fail when needed to interrupt an erratic and possibly fatal heart rhythm. At least six patients who got the devices died.

MITdevelopingwheelchairsthatlistentovoicecommands

A robotic wheelchair operated by voice commands is being developed at the Massachusetts Institute of Technology (MIT) in Cambridge. The prototype, which is a modi-fied power wheelchair, cost about $10,000, roughly double the price of a wheelchair without such specialized treatment, reports The Boston Globe.

The device could restore indepen-dence to wheelchair-bound patients who don’t have the physical ability to

iPad,cartoonbearseektoeasekids’fearsofmedicine

A cartoon bear named Buddy and a cartoon kid named Max are trying to assure patients that scary tests and treatments in the hospital aren’t really so bad. The task is being accom-plished using iPad™ mobile digital devices, according to a HealthLeaders Media article.

Max and Buddy’s “Bear Facts about CT Scans” application is being used by the Walt Disney Pavilion at Florida Hospital for Children in Orlando and St. Luke’s Health System in Boise, ID. The module is being used to determine whether children can learn in a fun and animated way.

Elseviertoofferfreepoint-of-careCMEcredits

Elsevier, a provider of healthcare and medical pub-lishing and online solutions headquartered in Amsterdam, announced that the Cleveland Clinic for Continuing Education will provide point--of-care continuing medical education (CME) credits to users of MD Consult and First Consult. Users of these tools will earn CME credits as they perform search-es and access relevant content to answer patient care questions.

For more information, visit www.elsevier.com.

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maneuver their wheelchairs, such as patients with multiple sclerosis and amyotrophic lateral sclerosis (ALS), often referred to as Lou Gehrig’s disease.

Moredoctorsareprescribingmedicationsonline

Doctors are increasingly prescrib-ing medications electronically instead of through paper prescriptions, which can result in drug errors due to hard-to-read writing or coverage denials by a patient’s insurer. According to a Wall Street Journal article, the number of e-prescriptions nearly tripled in 2009 to 191 million from the 68 mil-lion ordered in 2008. This represents about 12% of the 1.63 billion original prescriptions ordered, excluding refills, according to Surescripts, LLC, whose online network handles the bulk of electronic communications.

About 25% of all office-based doc-tors currently have the technology to e-prescribe, which is more than twice as many that had the capability at the end of 2008. H

Studyfindsbarcodesreducemedicationerrors

Using barcode technology can substantially reduce transcrip-tion and medica-tion errors and prevent adverse events, finds a new study funded by the Agency for Healthcare Research and Quality. Researchers at Brigham and Women’s Hospital in Boston compared error rates in order transcription and medication administration before and after it implemented a barcode elec-tronic medication administration system (eMAR), according to a HealthLeaders Media article.

The eMAR system sends electronic alerts when a patient’s medication is overdue or when there is a mismatch between the bar codes on a patient’s wristband and the medication.

Of the 14,041 medication administrations and 3,082 order transcriptions reviewed by researchers, 776 errors were unrelated to timing on ICUs that did not use the barcode eMAR, compared to just 495 on units that had imple-mented the system—a 41.4% relative reduction in errors.

The rate of potential adverse drug events also fell by just over 50%, and the rate of timing errors in medication administration dropped by 27.3%.

You can find the research in the May 6 New England Journal of Medicine.

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HEALTHCARE GUIDE TO THE INTERNET




OUR SITE-RATING SYSTEM

***** **** *** ** *� Excellent� Very�good� Good� Fair� Adequate

Focus: Lupus resources

Alliance for Lupus Research . . . . . . . . . . . . . . . . . . . . . . . . . 10

American Academy of Dermatology . . . . . . . . . . . . . . . . . . 11

DxLupus . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Lupus Alliance of America . . . . . . . . . . . . . . . . . . . . . . . . . . . 12

Lupus Canada . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13

Lupus Foundation of America, Inc. . . . . . . . . . . . . . . . . . . . 13

Lupus Research Institute . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

National Institute of Arthritis and Musculoskeletal

and Skin Diseases . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

SLE Lupus Foundation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

WomensHealth.gov . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16

Index: Lupus resources

about the disease, advice columns, content for the newly diagnosed patient, and podcasts.

Several lupus resources are described and reviewed in the following pages, as listed in the index below, using the five-star system to rate each on content, interface, and style.

Patients with lupus have immune systems that attack healthy cells and tissues in their bodies. This process can damage their joints, skin, blood vessels, and organs. The disease affects women who are African American, Hispanic, Asian, and Native American, but it can impact anyone. Lupus has no known cause or cure.

The Lupus Foundation of America, Inc. (www.lupus.org) contains a great deal of information about the disease. It also has an area for healthcare professionals, which offers continuing education opportunities, conference and meet-ing details, updates and guidelines, patient resources, clini-cal studies, articles, and more. This site contains an online community that houses a message board and Web chats, as well.

If you’re looking for research on lupus, you’ll want to visit the Lupus Research Institute site (www.lupusresearchinstitute.org). You’ll find updates on drug development, research breakthroughs, clinical trials information, and more.

The SLE Lupus Foundation (www.lupusny.org) is another content-rich site worth exploring. It contains information AllianceforLupusResearch

www.lupusresearch.org

Ratings: Content: **** Interface: **** Style: ****

The Alliance for Lupus Research (ALR) is a national vol-untary health organization based in New York City. The organization contributes millions of dollars to lupus research every year and holds nationwide lupus walks to raise additional funds. The mission of ALR is “to find better treatments and ultimately prevent and cure systemic lupus erythematosus (SLE, or lupus), a debilitating autoimmune disease.”

You can navigate this site using the links at the top of the page, some of which expand to display additional menu options. You can also click on links to featured content on the site’s home page, such as videos and event information.

Key features of this site include: » Information about the organization » An overview of lupus » A list of the symptoms associated with the disease » Information about how physicians diagnose the disease » Public policy content » Details on ALR-funded research




Key features of this site include: » An online pamphlet titled “Lupus and the Skin” » A definition of the disease » Information about how lupus affects the skin through spe-

cific skin lesions and other problems » Images of how lupus affects the skin » Information about how pregnancy is affected by lupus

that presents with skin symptoms » Information about hair loss from the disease » Treatment options, including sunscreen, systemic drugs,

and oral drugs » Links to external sites

Unique elements: The site contains many helpful images of skin lesions and other skin problems that occur with lupus.

Comments: If you’re interested in seeing more images of lupus, you might want to consider visiting the Logical Images website (www.logicalimages.com). The company’s online tools contain images of many diseases and conditions that present with skin symptoms.

Cost: The majority of the information on the site is free, with certain areas restricted to AAD members.

RSS XML link: None. Keywords: systemic lupus erythematosus, SLE, lupus,

autoimmune diseases, chronic diseases, American Academy of Dermatology, AAD.

DxLupuswww.dxlupus.org

Ratings: Content: ***** Interface: *** Style: ***

DxLupus is a patient-focused website that contains infor-mation about lupus. The site is aimed at people with the disease and their caregivers.

The site is undergoing a redesign, but it still offers helpful information in its current state. You can navigate this site using the links on the right-hand side and top of the page, some of which expand to display additional menu options. You can also click on links to featured content on the site’s home page, such as videos. The site’s interface also allows you to identify yourself in order to access the content that best meets your needs.

Key features of this site include:

» Lupus research updates » Information about drugs that are in the trial phase » News articles » Links to additional resources

Unique elements: The site contains informational videos, including a message from former president Bill Clinton. Select About the ALR, then click Videos and Pictures to access this content.

Comments: If you’d like to receive more information from the organization, enter your e-mail address in the Newsletter Sign-Up field on the site’s home page.

Cost: Free. RSS XML link: None. Keywords: systemic lupus erythematosus, SLE, lupus,

autoimmune diseases, chronic diseases, Alliance for Lupus Research, ALR.

AmericanAcademyofDermatologywww.aad.org

Ratings: Content: **** Interface: **** Style: *****

The American Academy of Dermatology (AAD) represents practicing dermatologists in the United States. Their mission is to promote leadership in the specialty and excellence in patient care through education, research, and advocacy.

You can navigate this site using the drop-down links at the top of the page. You can also click on links to featured content on the site’s home page, such as patient resources, news articles, and online tools. To access the lupus content on the site, enter the term in the search field or select Public, Conditions/Diseases, Dermatology A–Z; from the next screen, click L, then select Lupus.




options. You can also click on links to featured content on the site’s home page, such as research news, blog links, and an online store.

Key features of this site include: » Information about the organization » A disease overview, including the different types of lupus » Symptoms associated with lupus, such as fever, loss of

appetite, rashes, seizures, and muscle pain » Potential causes for the disease, including genetics » Information about laboratory tests often given to patients » A list of medications commonly used on patients, such as

steroids, antimalarials, and NSAIDs » Information about secondary conditions that may accom-

pany the disease » A find-a-doctor lookup tool » Information about childhood lupus » A list of medications that may cause drug-induced lupus » News articles » Research updates » Advocacy information » Links to additional resources » A glossary of lupus-related terms

» Information about the disease » Information for patients based on their age group and

demographic information » Information for caregivers of someone with lupus » Advice on taking charge of your health if you have the

disease » Updates on current lupus research » Information for medical professionals » A movie titled What Is Lupus? » Lupus slide shows

Unique elements: The site contains a video/audio library that houses many videos of patients and caregivers talking about the disease. To access this content, click on the Video Library link at the top of the page.

Comments: The site contains information in English and Spanish.


autoimmune diseases, chronic diseases, DxLupus.

LupusAllianceofAmericawww.lupusalliance.org

Ratings: Content: ***** Interface: **** Style: ****

The Lupus Alliance of America (LAA) consists of a group of agencies providing services to people affected by lupus within their local communities. The LAA’s mission is “to ensure the delivery of services to those affected by lupus through affiliate members and other agencies and to fund research efforts.”

You can navigate this site using the links at the top of the page, some of which expand to display additional menu

Unique elements: The site contains an online social com-munity where users can find links to social networking tools. Users can also learn about others and post information about their own experiences with the disease. Registration is required to use this feature.

Comments: The site contains information in English and Spanish.

Cost: Free. Registration is required to use certain features of the site.




Unique elements: Because the site is aimed at women, it contains information about concerns women have, such as how lupus affects pregnancy and breastfeeding.

Comments: You can sign up to receive additional infor-mation from the organization by providing your contact information in the Subscribe field on the home page.


autoimmune diseases, chronic diseases, World Lupus Day, Walk A Block, Lupus Canada.

LupusFoundationofAmerica,Inc.www.lupus.org

Ratings: Content: ***** Interface: **** Style: *****

Established in 1977, the Lupus Foundation of America, Inc. (LFA) is a national nonprofit health organization that is working to find the causes and cure for lupus. It also pro-vides support and services to people affected by the disease.

The site contains a section titled Healthcare Professionals. Here, you’ll find continuing education opportunities, conference and meeting details, updates and guidelines, patient resources, clinical studies, articles, and links to additional resources.

You can navigate the LFA’s site using the links at the top of the page, some of which expand to display additional menu options. You can also click on links to featured con-tent on the site’s home page, such as featured articles, site tools, and news updates. The home page also contains quick links to frequently accessed content. You’ll find them in the bottom left of the page under the heading “I want to ...”

Key features of this site include: » An overview of the disease » Information about how physicians diagnose lupus in patients » Treatment options for those with the disease, including

medications, investigational treatments, and complemen-tary and alternative medicines and therapies

» A description of how lupus affects a person’s body » Advice for living and coping with the disease » Information for men and parents of children with the lupus » Personal stories of people who suffer from the disease » A blog titled On the Road to a Cure » Links to additional resources » Online polls

RSS XML link: www.lupusalliance.org/rss/lupus.xmlKeywords: systemic lupus erythematosus, SLE, lupus,

autoimmune diseases, chronic diseases, Lupus Alliance of America, LAA.

LupusCanadawww.lupuscanada.org


Lupus Canada is a nonprofit organization that encour-ages cooperation among the lupus organizations in Canada and promotes public awareness and general education about lupus.

The full site displays after you select either English or French at the bottom of the home page. You can navigate this site using the links on the left-hand side of the page. You can also click on links to featured content on the home page, such as videos.

Key features of this site include: » Research updates » Information for those living with the disease » An overview of the disease » Information about the people that lupus affects » Symptoms of lupus » Treatment options » Information for young people with lupus, including an

online newsletter » Resources for caregivers and healthcare professionals, such

as an online book and an Ask the Experts feature » An online store » Links to additional resources » Advocacy information » News articles




You can navigate this site using the links at the top of the page, some of which expand to display additional menu options. You can also click on links to featured content on the site’s home page, such as news articles and event information.

Key features of this site include: » Information about the institute » A video that tells the story of LRI and its members, sci-

entists, physicians, and advocates » News articles » Information about the institute’s discoveries » Drug development news » LRI newsletters » Event information » Information on lupus clinical trials » An overview of the disease and its symptoms » Information on how physicians diagnose the disease » Potential treatment options, such as pain relievers, anti-inflammatory medications, and drugs to quiet the immune system

» Self-care information » Links to additional resources » Profiles of patients

Unique elements: The LRI allows users to connect with the organization through many social networking sites.

Comments: If you want to obtain additional resources from LRI, click on the Get Email Updates link on the home page and provide your contact information.


autoimmune diseases, chronic diseases, Lupus Research Institute, LRI.

» Information about the LFA research program » Descriptions of basic and clinical research » Lupus research summaries » Links to local lupus resources » Details about online publications, including Lupus Now » Event information » A list of patient and family resources » Advocacy information

Unique elements: The Online Community section of the site contains message boards and Web chats. Registration may be required to use these additional features.

Comments: The site contains an Ask the Experts feature. You’ll find it (and an archive of past questions) in the Join the Online Community section. Sample topics include pedi-atric lupus, lupus in men, laboratory tests, and pregnancy and lupus.

Cost: Free. Some features, such as the message board, require free registration.

RSS XML link: http://www.lupus.org/webmodules/webarticle-snet/rss.aspx?z=59

Keywords: systemic lupus erythematosus, SLE, lupus, autoimmune diseases, chronic diseases, Lupus Foundation of America, Inc., LFA.

LupusResearchInstitutewww.lupusresearchinstitute.org

Ratings: Content: ***** Interface: ***** Style: *****

The Lupus Research Institute (LRI) is a nonprofit organization that is devoted to novel research in lupus. The institute believes that innovative research is the key to finding safer and more effective treatments and a cure for lupus.




NationalInstituteofArthritisandMusculoskeletalandSkinDiseaseswww.niams.nih.gov


The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), one of the National Institutes of Health (NIH), supports research into the causes, treat-ment, and prevention of arthritis and musculoskeletal and skin diseases, the training of scientists, and the dissemination of information on research progress.

You can navigate this site using the links at the top of the page. You can also click on links to featured content on the site’s home page, such as research updates, funding opportu-nities, and featured articles. To access the lupus information on the site, click L in the Health Information Index section on the home page and select Lupus.

Key features of this site include: » An overview of the disease » Information about the potential causes of lupus, such as

genetics » A list of symptoms associated with the disease, such as

painful or swollen joints, unexplained fever, hair loss, and sensitivity to the sun

» How physicians diagnose lupus through medical histories, physician examinations, laboratory tests, and skin and kid-ney biopsies

» Treatment options available to patients, such as NSAIDs, antimalarials, and corticosteroids

» Quality of life information » Content regarding pregnancy and contraception in women

with lupus » Research updates

» Links to additional resources » A list of diagnostic tools for lupus » Warning signs of a flare-up of the disease (increased

fatigue, pain, rash, fever, abdominal discomfort, headache, and dizziness) and how to prevent them

» Information for multicultural communities regarding lupus » A fast-facts publication » Spanish publications » Advice on how patients can work with their physicians

Unique elements: The site contains A Patient Guide for Nurses and Other Health Professionals. You’ll find it along the right-hand side of the lupus section.

Comments: Users can search for clinical trials using the site. Cost: Free. RSS XML link: None. Keywords: systemic lupus erythematosus, SLE, lupus,

autoimmune diseases, chronic diseases, National Institutes of Health, NIH, National Institute of Arthritis and Musculoskeletal and Skin Diseases, NIAMS.

SLELupusFoundationwww.lupusny.org


The SLE Lupus Foundation provides patient services, education, public awareness, and funding for lupus research on a national level. It has headquarters in New York City and offices in Los Angeles.

You can navigate this content-rich site using the links on the left-hand side of the page. You can also click on links to featured content on the site’s home page, such as news articles, event information, and online tools.

Key features of this site include: » Information about the foundation and its mission » Information about the people who get lupus, including

content related to gender and racial disparities » Common symptoms associated with lupus, such as achy

joints, fever, fatigue, skin rashes, chest pain, photosensitiv-ity, and hair loss

» How physicians diagnose the disease, including a list titled “The Eleven Criteria of Lupus”

» Treatment options for patients, including medications and self-care




WomensHealth.govwww.womenshealth.gov


The National Women’s Health Information Center (NWHIC) is a service of the Office on Women’s Health in the U.S. Department of Health and Human Services (HHS). The NWHIC is a resource on women’s health, containing more than 800 topics through both its call center and website.

You can navigate this site using the links on the home page. To access lupus information on the site, click Health Topics, Fact Sheets, and then select Lupus from the Autoimmune Diseases section.

Key features of this site include: » Information about the disease » A description of the types of people who get lupus » Why women should be concerned about the disease » Symptoms of lupus in women » A definition of what “flares” are » How doctors diagnose the disease » Treatment options for women with the disease » How to control symptoms and prevent flares » Coping advice

Unique elements: Because the site is aimed at women, it contains information about how lupus affects pregnancy, breastfeeding, and other concerns women have.

Comments: The site is available in English and Spanish. Cost: Free. RSS XML link: None. Keywords: systemic lupus erythematosus, SLE, lupus,

autoimmune diseases, chronic diseases, U.S. Department of Health & Human Services, HHS, WomensHealth.Gov. H

» Advice columns » Advice for patients living with the disease » Content aimed at the newly diagnosed patient » Answers to FAQs » Stories from patients » Suggested reading » Links to related websites » Information about the foundation’s programs, including

support services, multicultural programs, information for children, and advocacy efforts

» News articles » An overview of the foundation’s involvement in lupus

research » Clinical trials information » Volunteer opportunities

Unique elements: The site contains podcasts on topics including medication compliance in young people with the disease.

Comments: You can receive additional information from the foundation by clicking the Email Sign Up link in the navigation structure and providing your contact information.

Cost: Free. RSS XML link: www.lupusny.org/rss/lupus-rss.xml Keywords: systemic lupus erythematosus, SLE, lupus,

autoimmune diseases, chronic diseases, SLE Lupus Foundation.

HEALTHCARE GUIDE TO THE INTERNET




Scleroderma means “hard skin.” Its sufferers experience abnormal growth of the connective tissue that supports their skin and organs. The disease is more common in women, and symptoms range from mild to severe. There is no cure for scleroderma, but there are treatments available.

The Scleroderma Care Foundation site (www.sclerodermatt.org) is a great place to begin your research. It contains great content housed in a well-organized and visually appealing site. One unique feature of the site is its online videos. Video categories include better health, inspiration, and news. The site also contains a helpful glossary of scleroderma terms and recipes that sufferers can follow to improve their health.

The Scleroderma Foundation site (www.scleroderma.org) is equally impressive. It contains an online message board (registration required). The board connects patients, fami-lies, friends, and caregivers and enables them to support one another.

Lastly, those looking for information on how scleroderma affects children will want to visit the Juvenile Scleroderma Network site (www.jsdn.org). The site contains information

on treatment options for children, the emotional effects of the disease, summer camp options, and advice for helping children in the school setting.

Several scleroderma resources are described and reviewed in the following pages, as listed in the index below, using the five-star system to rate each on content, interface, and style.

Focus: Scleroderma resources

OUR SITE-RATING SYSTEM

***** **** *** ** *� Excellent� Very�good� Good� Fair� Adequate

American College of Rheumatology . . . . . . . . . . . . . . . . . . .17

International Scleroderma Network. . . . . . . . . . . . . . . . . . 18

Johns Hopkins Scleroderma Center . . . . . . . . . . . . . . . . . . 18

Juvenile Scleroderma Network . . . . . . . . . . . . . . . . . . . . . . .19

National Institute of Arthritis and Musculoskeletal

and Skin Diseases. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20

Raynaud’s Association . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20

Scleroderma Care Foundation . . . . . . . . . . . . . . . . . . . . . . . .21

Scleroderma Foundation . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22

Scleroderma Society of the UK . . . . . . . . . . . . . . . . . . . . . . 22

Scleroderma Society of Canada. . . . . . . . . . . . . . . . . . . . . . 23

Index: Scleroderma resources

AmericanCollegeofRheumatologywww.rheumatology.org

Ratings: Content: **** Interface: ***** Style: *****

The American College of Rheumatology (ACR) is an organization of physicians, health professionals, and scien-tists that advances rheumatology through programs of edu-cation, research, advocacy, and practice support of people with arthritis and rheumatic and musculoskeletal diseases. The mission of the ACR is simply to advance the field of rheumatology.

You can navigate this website using the top-level navi-gation structure. You can also access featured content on the site’s home page, such as news articles and resources. To access the scleroderma information on the site, select Practice Management, click Diseases and Conditions, then select Scleroderma.

Key features of this site include: » A description of the disease » Information about localized and systemic scleroderma » Information on the likely causes of the disease » Treatment options for patients, such as glucocorticoids,

intravenous immunoglobin, and/or immunosuppressive medications




» Information about the disease and other related diseases » An online photo repository, which contains images of

scleroderma symptoms » Scleroderma-related news articles » An online brochure titled “What Is Scleroderma?” » Access to the ISN’s Voices of Scleroderma book series » Links to support groups in the United States and worldwide

» Patient and caregiver stories » An online store » Information for students researching scleroderma

Unique elements: The site contains many interactive and multimedia elements such as forums, blogs, chats, and videos. The forums, in particular, offer free daily online support.

Comments: Users can join the ISN mailing list to receive news and updates from the network. You’ll find the link at the top right of the home page.

Cost: Free.RSS XML link: None.Keywords: scleroderma, localized scleroderma, systemic

scleroderma, systemic sclerosis, vascular diseases, connective tis-sue diseases, rheumatic disorders, autoimmune diseases, sclero-derma research, International Scleroderma Network, ISN.

JohnsHopkinsSclerodermaCenterhttp://scleroderma.jhmi.edu


The Johns Hopkins Scleroderma Center specializes in caring for patients with scleroderma and related conditions, such as Raynaud’s phenomenon, localized scleroderma, scleromyxedema, scleredema, and eosinophilic fasciitis. The doctors at the center are full-time faculty members at The Johns Hopkins University School of Medicine and are all board-certified in rheumatology.

The mission of the center is to provide excellent clinical care while seeking to better understand the causes and best treatment approaches for scleroderma. The physicians at the center are actively involved in clinical or translational research, looking for ways to transform discoveries in the lab into new and improved treatments for patients.

You can navigate this website by identifying yourself as either a patient, physician, or researcher to obtain specific

» A description of how physicians diagnose a patient with scleroderma

» Advice on living with the disease » Links to additional information » A find a rheumatologist lookup tool

Unique elements: The site contains fast facts and statistics about the disease and its prevalence in the United States.

Comments: The content listed above is available in PDF format. It is also available in Spanish.

Cost: A good deal of content is available for free; other content can only be accessed by members.

RSS XML link: None.Keywords: scleroderma, localized scleroderma, systemic

scleroderma, systemic sclerosis, vascular diseases, connective tissue diseases, rheumatic disorders, autoimmune diseases, American College of Rheumatology, ACR.

InternationalSclerodermaNetworkwww.sclero.org

Ratings: Content: **** Interface: * Style: *

The Ineternational Scleroderma Network (ISN) provides research, support, education, and awareness for scleroderma and related illnesses, such as Raynaud’s and pulmonary hypertension.

This website does not have a user-friendly interface; how-ever, what it does have is an abundance of information in 23 languages. You can navigate the site using various links on the home page, which are organized by title. You can also search for information using the search engine on the home page, which may make finding specific content easier.

Key features of this site include: » Links to scleroderma experts




JuvenileSclerodermaNetworkwww.jsdn.org


Founded in 1999, the Juvenile Scleroderma Network is a nonprofit membership organization comprised of volunteer parents, health professionals, and people interested in juve-nile scleroderma (JS). The mission of the organization is “to provide emotional support and educational information to parents and their children living with juvenile scleroderma; to support pediatric research to identify the cause and the cure for juvenile scleroderma; to enhance the public’s aware-ness of juvenile scleroderma and related diseases.”

You can navigate this website using the left-hand naviga-tion structure. You can also click on links to featured con-tent on the site’s home page, such as news articles.

Key features of this site include: » Information about juvenile scleroderma » Statistics related to JS in children » Treatment options for children » The emotional effects of JS on children » Information about the network » Stories by children and their parents » Links to medical resources on the Web » Advocacy information » An online community » Summer camp options » Research updates » An archive of medical articles

Unique elements: The site contains content on how scleroderma affects children in the school setting and what parents and teachers can do to accommodate children’s unique needs. Click on School Issues on the left-hand side of

content that meets your interests. You can also access fea-tured content on the site’s home page.

Key features of this site include: » Information about the center » An overview of the types of scleroderma—limited and

diffuse » Answers to FAQs » Advice for living with the disease, which addresses topics

such as finger and skin care, pain and fatigue, and gastro-intestinal tract issues

» A list of treatment options, such as anti-inflammatory medications, immunosuppressive therapy, and drug therapy of vascular disease

» Patient stories » A list of patient resources » Referral instructions » Research publications » Information about translational research » Links that help patients to make appointments and physi-

cians to refer patients

Unique elements: The site contains a video resource cen-ter with resources for patients and physicians. You will need to install Microsoft Silverlight to view these videos. Videos include Pulmonary Hypertension in Scleroderma and Scleroderma-Like Fibrosing Disorders of the Skin.

Comments: The site contains information for patients interested in clinical trials.


scleroderma, systemic sclerosis, vascular diseases, connective tissue diseases, rheumatic disorders, autoimmune diseases, Johns Hopkins Medicine, Johns Hopkins Scleroderma Center.




environmental triggers, hormones, and abnormal immune or inflammatory activity

» How physicians diagnose patients with the disease based on medical history and physical exam findings

» Other conditions that may present like scleroderma » Treatment options » How the disease impacts a patient’s life » Advice on playing a role in your healthcare if you have

scleroderma » Research progress » Links to additional information » Definitions of scleroderma-related terms » Summaries of scleroderma research » Clinical trials information » Journal articles

Unique elements: The site contains a fast facts sheet on the disease. Click on the link on the right-hand side of the scleroderma section of the site.

Comments: The site contains info in English and Spanish. Cost: Free.RSS XML link: None.Keywords: scleroderma, localized scleroderma, systemic

scleroderma, systemic sclerosis, vascular diseases, connective tissue diseases, rheumatic disorders, autoimmune diseases, scleroderma research, National Institutes of Health, NIH, National Institute of Arthritis and Musculoskeletal and Skin Diseases, NIAMS.

Raynaud’sAssociationwww.raynauds.org


The Raynaud’s Assocation is a national nonprofit organi-zation whose mission is to provide support and education to sufferers of Raynaud’s phenomenon, an exaggerated sen-sitivity to cold temperatures. The association raises aware-ness and educates the public about Raynaud’s, which can be painful and may cause serious blood vessel damage in some patients. Raynaud’s is a narrowing of the blood vessels in the hands or feet, which can be a symptom of scleroderma.

You can navigate this website using the top-level naviga-tion menu, which expands and displays additional submenu options. You can access featured content on the site’s home

the home page to learn more. Comments: The site contains a section for healthcare pro-

fessionals, such as pediatricians and school nurses, who work with children with scleroderma. They can receive literature from the JSDN at no charge, such as brochures.

Cost: Free.RSS XML link: None.Keywords: scleroderma, juvenile scleroderma, localized

scleroderma, systemic scleroderma, systemic sclerosis, vascu-lar diseases, connective tissue diseases, rheumatic disorders, autoimmune diseases, Juvenile Scleroderma Network, JSN.

NationalInstituteofArthritisandMusculoskeletalandSkinDiseaseswww.niams.nih.gov


The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) supports research into the causes, treatment, and prevention of arthritis and musculo-skeletal and skin diseases. It also trains scientists to carry out research and disseminates information on research progress. It is part of the National Institutes of Health (NIH).

You can navigate this website using the top-level naviga-tion menu. You can access featured content on the site’s home page, such as clinical trials seeking patients, announce-ments, and research information. The home page also includes a drop-down list that will take you to some of NIAMS’ most requested health publications. To access scleroderma content on the site, click the letter S from the Health Information Index and then select Scleroderma.

Key features of this site include: » A description of scleroderma » Information about the different types of the disease » Potential causes of scleroderma, such as genetic makeup,




You can navigate this website using the right-hand navigation structure. You can also click on content links on the site’s home page. The site appears to be arranged in blog format. Users are able to comment on articles on the site.

Key features of this site include: » Timely articles related to scleroderma news, such as an

article that reveals a new genetic link to scleroderma » A description of the disease » Information about the different types of scleroderma » Symptoms associated with the disease » Potential causes for the disease » Risk factors for scleroderma » How physicians diagnose patients with the disease » Treatment options for scleroderma sufferers » Advice for daily living » Complications that can occur with the disease and how

to prevent them by taking precautions such as avoiding smoking and dressing warmly

» News articles, inspirational articles, and research updates » Recipes for scleroderma sufferers » A community section that contains information about programs, events, a photo gallery, testimonials, and memorials

» Advice on ways you can become involved with the founda-tion and help support its mission

» Links to social networking tools where the SCF has pages and profiles

» Links to additional resources

Unique elements: The site contains numerous online vid-eos. Video categories include better health, inspiration, and news. Click on the Video link in the right-hand navigation menu to view a complete list of videos.

Comments: The site contains a glossary of terms.

page, such as news articles and an online store.Key features of this site include: » Testimonials from association members » Information about the disease, including its symptoms » Answers to FAQs, including how the disease is diagnosed,

risk factors, and treatment options » Advice on coping with the disease » Product reviews and sponsor information » Links to additional resources » Raynaud’s information cards » Member stories » An online store

Unique elements: The site contains discussion forums. To access them, select Support, then click Discussion Forums. Free registration is required for access.

Comments: Users can access the site’s newsletter, Cold Cuts, from the home page.

Cost: Free.RSS XML link: None.Keywords: Raynaud’s phenomenon, Raynaud’s disease,

scleroderma, vascular diseases, connective tissue diseases, rheumatic disorders, autoimmune diseases, scleroderma research, Raynaud’s Association, RA.

SclerodermaCareFoundationwww.sclerodermatt.org

Ratings: Content: ***** Interface: **** Style: *****

Founded in 2008, the Scleroderma Care Foundation (SCF) is a nonprofit organization that is dedicated to the overall improvement of quality of life for those who have been afflicted with or affected by scleroderma.




» Medication information » Information about scleroderma registries » Information aimed at healthcare professionals » News articles » Information for researchers and updates on ongoing

research » Advocacy information » Resources for those looking for an SF chapter, support

group, or international group » An online video that lets users learn more about sclero-derma and the foundation (Windows Media Player is required)

Unique elements: The site contains an online message board. Free registration is required for access. The Scleroderma Foundation Support Community connects patients, families, friends, and caregivers so that they may support one another.

Comments: Users can sign up to receive the foundation’s newsletter by entering their e-mail address in the designated field on the home page.


scleroderma, systemic sclerosis, vascular diseases, connective tissue diseases, rheumatic disorders, autoimmune diseases, Scleroderma Foundation, SRF.

SclerodermaSocietyoftheUKwww.sclerodermasociety.co.uk


The Scleroderma Society is a charity founded in 1982 and based in the United Kingdom. It’s an affiliate of the International Scleroderma Network. The society helps sup-port people with scleroderma, increases awareness of the disease, and funds scientific and medical research. Society members include patients, loved ones, doctors, and other healthcare professionals with an interest in scleroderma.

You can navigate this website using the top-level naviga-tion structure, which will display additional options along the left-hand side of the page. You can also click on links to featured content on the site’s home page.

Key features of this site include: » Information about the society


scleroderma, systemic sclerosis, vascular diseases, connective tissue diseases, rheumatic disorders, autoimmune diseases, Scleroderma Care Foundation, SCF.

SclerodermaFoundationwww.scleroderma.org


The Scleroderma Foundation (SF) is a nonprofit organiza-tion that supports scleroderma research in the United States. The foundation facilitates health and professional seminars, produces and distributes literature, and conducts publicity campaigns. The foundation also offers peer counseling, sup-port programs, and physician referrals.

You can navigate this website using the top-level navigation menu, which expands and displays additional submenu options. You can also access popular content using the Browse by Topic drop-down menu, which contains quick links. You can access featured content on the site’s home page, such as downloads, event information, and news articles.

Key features of this site include: » Information about the foundation » A description of the foundation’s national conference » Information for newly diagnosed patients, including a fact

sheet and a chart listing the types of scleroderma » Answers to FAQs » Downloadable brochures » Links to additional websites » An overview of the disease and information about juvenile

scleroderma » Medical articles




people concerned with scleroderma or systemic sclerosis. The mission of the SSC is “to promote awareness of scleroderma, to support research toward finding a cure, and to provide support and information to those affected by the disease.”

You can navigate the website using the top-level naviga-tion menu, which expands to display additional submenu options. You can also access featured content on the site’s home page, such as news articles, donation links, and announcements.

Key features of this site include: » Information about the society » A list of support groups within and outside of Canada » Information about the Canadian Scleroderma Research

Group (CSRG) » Access to archives of CSRG newsletters » Access to archives of the SSC’s newsletter, Canadian

Scleroderma News » News articles

Unique elements: The site contains many pamphlets in PDF format. Sample titles include “Scleroderma—Quick Facts,” “Managing Scleroderma,” “Raynaud’s Phenomenon,” and “What is Scleroderma?” To access them, select Publica-tions, then click Pamphlets.

Comments: The site contains links to additional resources within and outside of Canada.


scleroderma, systemic sclerosis, vascular diseases, connective tissue diseases, rheumatic disorders, autoimmune diseases, Canada, Scleroderma Society of Canada, SSC. H

» An overview of the disease » Membership information » Links to additional resources » News articles » Event information » Links to local groups in the United Kingdom » Personal stories from patients who want to share their

experiences with others » Pamphlets with titles such as “Scleroderma—Not

Just Hard Skin,” “Scleroderma in Young People,” and “Scleroderma of the Lung and Heart”

» Answers to FAQs » Articles » Ways to get involved in scleroderma fundraising

Unique elements: The site contains presentations such as “Internet as a Tool for Patient Support Groups” and “Scleroderma—Is It Just Tight Skin?”

Comments: The site contains an online message board. Click Message Board in the top-level navigation menu to access it.


scleroderma, systemic sclerosis, vascular diseases, connective tissue diseases, rheumatic disorders, autoimmune diseases, Scleroderma Society, SS.

SclerodermaSocietyofCanadawww.scleroderma.ca


The Scleroderma Society of Canada (SSC) is a regis-tered charity run by volunteers that serves the interests of




A patient-turned-activist named Sharon Monsky established the Scleroderma Research Foundation (SRF) in 1987, when research for this disease was nearly nonexistent. It is currently the leading nonprofit investor in medical research and therapies for sclero-derma. The SRF funds research at universities such as Dartmouth, Harvard, Johns Hopkins, Stanford University, Northwestern, and Boston University.

The organization’s mis-sion is “to fund and facili-tate the most promising medical research aimed at improved therapies and, ultimately, a cure for scleroderma.”

A great place to begin exploring this site and learn-ing more about the illness is by viewing the video Moving Forward, which shares the struggles related to sclero-derma, the obstacles patients face living with the disease, and the role that medical research plays in the search for a cure.

You can navigate this website using the top-level navigation menu, which expands and displays additional submenu options. You can access featured content on the site’s home page, such as downloads, event informa-tion, and news articles. The home page also contains a list of quick links to popular content, such as answers to FAQs.

Key features aimed at patients and caregivers include: » An overview of the disease » Information for the newly diagnosed patient » Information about the risk factors related to sclero-

derma, such as genetics and environmental factors » Clinical trials resources

» Tips for living with scleroderma, including how to manage symptoms and support your health after diagnosis

» A list of current treatments for scleroderma that help treat the symptoms of the disease, such as calcium channel blockers, ACE inhibitors, and NSAIDs

» Information on ways to become involved with the foundation and help support its mission » Links to treatment centers » An online store » An online newsletter

Key features aimed at researchers and scientists include:

» A description of the SRF research program that

funds promising research for improved therapies and a cure

» Descriptions of the foundation’s funded research grants, such as the grants’ investigators, institutions, and projects

» A description of the SRF Postdoctoral Fellowship program, which funds grants aimed at focusing prom-ising young investigators on specific research questions

» Research-related news articles » Grant guidelines and applications for those interested

in researching scleroderma » Scleroderma-related news articles » The foundation’s annual report » Information about scleroderma legislation

If you are interested in receiving information from the foundation, you can join the SRF mailing list. You’ll find the link to do so in the Get Involved section. H

SITE OF THE MONTH

Scleroderma Research Foundationwww.srfcure.org

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