The Genetic and Rare Diseases (GARD) Information Center The ORDR - - PowerPoint PPT Presentation
The Genetic and Rare Diseases (GARD) Information Center The ORDR Collaborative Patient Registry for Rare Diseases will be linked to GARD to assist the patients, their families and the medical community seeking information about rare diseases.
The ORDR Collaborative Patient Registry for Rare Diseases will be linked to GARD to assist the patients, their families and the medical community seeking information about rare diseases.
Provides free access to accurate, reliable information about genetic and rare diseases.
Provides both:
– individualized assistance in finding information to patients and families, health
professionals, and other interested parties;
– generalized information on the Web that is based on public inquiries.
Provides information about specific conditions from numerous resources including vetted Web sites, organizations, academic institutions, textbooks, medical literature and personal communication with experts, as needed.
**GARD staff do not provide genetic counseling or offer advice about diagnostic testing, referrals, or medical treatment.**
Staffed by 3.5 FTE Information Specialists who hold master’s degrees in genetic counseling or other medical training. Three bilingual Information Specialists are available.
Family members/Friends 39% Patients/At-Risk Individuals 33% Students 6% Unknown 5% Other Users (e.g.
teachers, media, librarian, legislator/policy maker, attorney, child care provider)
4% Health Care Providers 13%
Inquiries Received
100 200 300 400 500 1 2 3 4 5 6 7 8 9 10 11 12
Months (Jan 2005 - Jan 2010)
2005 2006 2007 2008 2009 201
GARD Web site launch January 2008
http://rarediseases.info.nih.gov/GARD
Currently there are 561 Q&As posted for 498 diseases
Centers for Disease Control and Prevention (CDC) – Newborn Screening Diseases Information Resources
The Food and Drug Administration’s (FDA) Office of Orphan Products Development (OOPD) – Approved Orphan Products
National Library of Medicine’s:
–
Genetic Home Reference (GHR)
–
Reference and Web Services
Health Resources and Services Administration’s (HRSA) Congenital Conditions Program and Newborn Screening Clearinghouse
3 1 , 2 6 3 4 , 3 1 4 5 , 4 3 4 4 6 , 6 7 7 2 , 4 1 7 1 3 , 3 4 8 1 4 , 3 6 7 2 4 , 1 2 7 3 5 , 3 1 3 3 3 , 8 3 2 7 , 9 1 9 3 1 , 8 8 4 3 2 , 4 5 5 4 3 , 7 1 4 7 , 2 4 6 3 , 7 4 5 9 , 9 7 4 5 7 , 6 4 6 7 , 9 6 8 6 5 , 8 4 9 7 4 , 1 3 6 7 2 , 6 1 5 6 6 , 3 8 7 7 2 , 3 2 3 10000 20000 30000 40000 50000 60000 70000 80000 Jan Feb Mar Apr May Jun Jul Aug Sept Oct Nov Dec
2008 2009 2010
*A visit is a series of actions that begins when a visitor views their first page from the server, and ends when the visitor
GARD Web site Visits
*A rare (or orphan) disease is generally considered to have a prevalence
“I thank you for your responses which are very prompt. I feel that you have been a great help to parents like me who have limited access or knowledge of what to expect… Because
information site is very informative and has a lot of other research information that is also
“I am so grateful... more than you know, and let me explain why. I sent 8 emails out to experts and 7 replies were generic, sending me to my pediatric endocrinologist, or back to their website, where I couldn’t find the answer to my question to begin with. Thank you for taking the time you did to answer my questions. This was incredibly helpful and satisfied the answers to all my questions.”
“Hi, Thank you, thank you, and thank you I cant tell you how important it is to feel like one maybe has some say in their future health. I have yet to contact the links youve provided but they all sound helpful and promising. I will pass on this information to my family so brace yourself Kind Regards.”