AMCHP 2005 Conference The Expansion of the Tennessee Genetics and Newborn Screening Program and Website Teresa M. Blake, MS, Genetic Counselor Beth 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 Conference Tennessee Newborn Screening 1968 PKU 1980 Hypothyroidism 1988 Sickle Cell and other Hemoglobinopathies 1992 Galactosemia 2000 Congenital Adrenal Hyperplasia 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 ( ) 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 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 Conference Evaluation of the New Website Research 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 Conference New Website - Content Clinical Genetic Services Parents & Consumers Health Care Professionals TN Genetics Plan Statewide Genetics Coordinating Committee (SGCC)

AMCHP 2005 Conference New 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 Conference New Website – Parents & Consumers Pamphlets –Newborn Screening –Newborn Hearing Screening –English and Spanish versions

AMCHP 2005 Conference New Website – Parents & Consumers Condition Summaries with Condition Specific Resources Glossary of Terms

AMCHP 2005 Conference New 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 Conference New Website – Healthcare Professionals Pamphlets –Newborn Screening –Newborn Hearing Screening

AMCHP 2005 Conference New Website – Healthcare Professionals Fact Sheets Detailed Condition Summaries

AMCHP 2005 Conference New 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 –Principal Investigator: Carmen Lozzio, MD, FACMG, Professor of Medical Genetics