global rare diseases patient registry data repository grdr
DESCRIPTION
Patient Registries are an essential tool and important resourceTRANSCRIPT
Global Rare Diseases Patient Registry Data Repository
GRDR
www.grdr.infoNIH Rare Disease Day
Feb. 27, 2013
Office of Rare Diseases Research (ORDR)
Yaffa [email protected]
Patient Registries are an essential tool and important resource
Global Rare Diseases Patient Registry Data RepositoryGRDR
Repository of
AggregatedDe-identified
Data
ExistingRegistrie
s
1. Patients providehealth information & test results using common data elements (CDEs)
4. GRDR aggregates de-identified patient clinical information & biospecimen data
5. De-identified registry data available to researchers for biomedical studies & clinical trials
7. Registry owners notify identified participants. Interested participants are directed to study PI
Patient Registries
Assign GUID
2. A Global Unique Patient ID (GUID) is assigned; patient data mapped to CDEs
3. Patient data linked to biospecimens via the GUID interfacing with RD-HUB
6. Researchers identify potential study participants; submit contact request to original registry owner
NewRegistrie
s
RD-HUBBiospecime
ns
Collecting Patient Data in a standardized manner
Common Data Elements http://www.grdr.info
Common Data
Elements
Identifiers
Socio-Demographics
Rare Disease Diagnosis
Family History
Birth & Reproductive History
Medications & Dietary Supplements
Utilization
Research Participation
ORDR/GRDR Mapping Guide
Registries with
diverse need and interest
Examples
MedicationsDiagnosesGenetic TestingDevices
Learn from
respondents
Develop Mapping strategy
Use:Unified Medical Language System (UMLS)Mapping Guide
Integrating Electronic Health Record
Common Data
Elements
Identifiers
Socio-Demographics
Rare Disease Diagnosis
Family HistoryBirth & Reproductive
HistoryMedications & Dietary
SupplementsUtilization
Ascertain whether a hybrid between the EHR and the organization's registry can be used to populate the GRDR repository
http://cde.nih.gov
Linking to Biospecimens Data http://biospecimens.ordr.info.nih.gov/
ORDR Open-source Patient Registry template
The Office of Rare Diseases Research (ORDR) at the National Center for Advancing Translational Sciences (NCATS) provides this Opensource Patient Registry Template toolkit as a service to the rare disease community as part of the Global Rare Diseases Patient Registry and Data Repository project. This opensource toolkit enables any organization to implement a patient registry, while using the ORDR/GRDR CDEs, in a manner that makes it easy to share de-identified registry data with the GRDR Data Repository.
ORDR Open-source Patient Registry Template
ORDR Open-source Patient Registry Template
Ability to customize registry appearance, content and functionality
Set up to collect data from individual patients using the ORDR/GRDR CDEs
Ability to add additional CDEs for data collection
Ability to generate charts of de-identified patient data
Ability to export and transfer data into the ORDR/GRDR data repository
ORDR Open-source Patient Registry Template
ORDR Open-source Patient Registry Template
ORDR Open-source Patient Registry Template
Access to the Open-source Patient Registry Template
Office of Rare Diseases Research
Dr. Steve Groft, Phar.D., DirectorDr. P.J. Brook (NIAAA)Dr. Davis EcksteinMs. Marita Eddy (Angel Flight)Dr. John FergusonDr. Rashmi Gopal-SrivastavaMr. Chris GriffinMs. Henrietta Hyatt-KnorrMs. Susan OrrDr. Yaffa Rubinstein