AMCHP 2005 ConferenceThe Expansion of the Tennessee Genetics and

Newborn Screening Program and

WebsiteTeresa M. Blake, MS, Genetic CounselorBeth Wilson, MS, MPH, David Hollar, PhD, Carmen

B. Lozzio, MD, FACMG, Lee Fleshood, PhD

University of Tennessee Graduate School of Medicine,

Department of Medical Genetics, Knoxville, TN

AMCHP 2005 Conference

Our Need• The Tennessee Genetics Plan

– Expansion of newborn screening with the use of tandem mass spectrometry (MS/MS)

– Increase consumer and healthcare provider understanding of genetic conditions

– Empower consumers to be effective advocates for their child with special health care needs

AMCHP 2005 ConferenceTennessee Newborn Screening• 1968 PKU

• 1980 Hypothyroidism• 1988 Sickle Cell and other Hemoglobinopathies• 1992 Galactosemia• 2000 Congenital Adrenal Hyperplasia• 2001-2004 Newborn Hearing Screening• 2003 Biotindase Deficiency• 2004 MCADD, MSUD, Homocystinuria• April 2004 Added 25 Amino Acid, Organic Acid, & Fatty

Acid Oxidation Disorders with MS/MS• July 2004 Universal NBS with MS/MS• The Future (2005-2006) Consideration for Cystic Fibrosis

AMCHP 2005 Conference

Our Need

• Our Old Website– One page– Two Pamphlets– Article citation on

MS/MS

AMCHP 2005 Conference

Methodology• September 2003 – October 2003• 40 state genetic websites were evaluated for the

50 states and Washington D.C.• Evaluation of website

– 2 evaluators– Qualitative evaluation

• Quantity and quality of content• Ease of access• Supplemental resource links

AMCHP 2005 Conference

Data• 10 websites were inaccessible, under construction,

or consolidated into one regional website (e.g. New England Newborn Screening Program)

• 9/40 (22.5%) websites provided ample, quality information with ease of navigation

• 5/40 (12.5%) websites provided supplemental resources links for consumers or healthcare providers

AMCHP 2005 ConferenceEvaluation of the New

WebsiteResearch of Other State Genetics Websites

Under the direction of the SGCC, genetic counselor and laboratory staff developed new website material

Review and Editorial Changes by the Consumer Involvement Subcommittee

Review and Editorial Changes by the Professional

Education Subcommittee

Review and Approval by the TN Genetic and Newborn Screening Program Director and the TN Director of Communications

and Media Relations

Website Development by TN Department of Health

AMCHP 2005 ConferenceNew Website - Content

• Clinical Genetic Services• Parents & Consumers• Health Care Professionals• TN Genetics Plan• Statewide Genetics

Coordinating Committee (SGCC)

http://www2.state.tn.us/health/MCH/NBS/index.htm

AMCHP 2005 ConferenceNew Website – Genetic

Services • We provided a listing of the centers in

the state that provide clinical genetic services along with a link to outreach clinic sites.

AMCHP 2005 ConferenceNew Website – Parents &

Consumers• Pamphlets

– Newborn Screening– Newborn Hearing Screening– English and Spanish versions

AMCHP 2005 ConferenceNew Website – Parents &

Consumers• Condition Summaries with Condition

Specific Resources• Glossary of Terms

AMCHP 2005 ConferenceNew Website – Parents &

Consumers• Tennessee Resources – Family Voices of Tennessee– Tennessee Family Pathfinder– Tennessee’s Early Intervention System

• National Resources– General Information– Genetic & Metabolic Information– Hearing Screening Information

AMCHP 2005 ConferenceNew Website – Healthcare

Professionals• Pamphlets

– Newborn Screening– Newborn Hearing Screening

AMCHP 2005 ConferenceNew Website – Healthcare

Professionals• Fact Sheets• Detailed Condition

Summaries

AMCHP 2005 ConferenceNew Website – Healthcare

Professionals• Newborn Screening Resources

• Education Resources

• Genetic Resources

AMCHP 2005 Conference

New Website – Grant & SGCC• Tennessee Genetic Plan • Statewide Genetics Coordinating

Committee Membership and working Subcommittees

AMCHP 2005 Conference

Lessons Learned• Determine your specific resources and limitations

– Who gives final approval?– What can and cannot be on the website?– Patience, it will take time to create a comprehensive

website.

• Involve parents and consumers in the development and evaluation– Review of working drafts– Breakup the text with pictures, clipart, etc.

AMCHP 2005 Conference

Future Directions

• Suggestions Section• Additional Condition Summaries and Fact Sheets• Pediatric Audiology Assessment & Amplification

Guidelines• Continuing education credits for healthcare

professionals • Language Versions (e.g. Spanish,

Kurdish, Korean)

AMCHP 2005 Conference

Acknowledgements

• Members of the Statewide Genetics Coordinating Committee

• Staff of the Tennessee Department of Health• Support from

– HRSA Grant #1 U93 MC 00230-01– Principal Investigator:

Carmen Lozzio, MD, FACMG, Professor of Medical Genetics