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From: NIH news releases and news items [mailto:[log in to unmask]] On
Behalf Of NIH OLIB (NIH/OD)
Sent: Friday, September 06, 2013 10:51
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Subject: NIH LAUNCHES FIRST NATIONAL DOWN SYNDROME REGISTRY
U.S. Department of Health and Human Services NATIONAL INSTITUTES OF HEALTH
NIH News Eunice Kennedy Shriver National Institute of Child Health and Human
Development <http://www.nichd.nih.gov/>
For Immediate Release: Friday, September 6, 2013
CONTACT: Katie Rush , 301-496-5133, <e-mail:[log in to unmask]>, Bob Bock,
301-496-5133, <e-mail:[log in to unmask]>
NIH LAUNCHES FIRST NATIONAL DOWN SYNDROME REGISTRY Registry connects
families and individuals with Down syndrome to researchers
The National Institutes of Health has launched DS-Connect
<https://dsconnect.nih.gov/>, a Web-based health registry that will serve as
a national health resource for people with Down syndrome and their families,
researchers, and health care providers.
"The Down syndrome community has voiced a strong need for a centralized,
secure database to store and share health information. DS-Connect fills that
need, and helps link individuals with Down syndrome to the doctors and
scientists working to improve their health and quality of life," said Yvonne
T. Maddox, deputy director of the NIH's Eunice Kennedy Shriver National
Institute of Child Health and Human Development (NICHD), which funded and
developed the registry.
Participation in the registry is free and voluntary. Individuals with Down
syndrome, or family members, on their behalf, may sign up to create
personalized profiles with information about their health histories,
including symptoms, diagnoses, and medical visits. The website has been
designed to ensure that all information remains confidential. The site will
separate users' names from their health information, so that individuals may
compare their health information with that of all other participants in an
anonymous manner.
If participants give permission to be contacted, the registry coordinator
can inform them of research studies in which they may be interested. Results
from these studies will help researchers better understand Down syndrome and
how to treat its accompanying health problems across the lifespan.
"DS-Connect is for people of all ages, not just children," said Dr. Maddox.
"Right now, we don't have much data on older individuals with Down syndrome,
and that's been a problem. People with Down syndrome are living longer, and
researchers and physicians will require information about the health issues
and needs of these individuals to make recommendations about their health
care."
The Down Syndrome Consortium
<http://downsyndrome.nih.gov/Pages/default.aspx>, a public-private group
established in 2011 to foster the exchange of information on Down syndrome
research, will be a critical player in helping to disseminate information
about the registry to the Down syndrome community. The consortium includes
individuals with Down syndrome and their family members, representatives
from professional societies and advocacy groups, and NIH scientists.
"We've been fortunate to have so many experts and advocates provide input on
this effort," said Dr. Maddox. "The establishment of this registry is a
tremendous step forward for Down syndrome research, and the resource will
become all the more beneficial as more individuals join in the months and
years ahead."
Note: NIH has applied for trademark protection for the name DS-Connect.
About the Eunice Kennedy Shriver National Institute of Child Health and
Human Development (NICHD): The NICHD sponsors research on development,
before and after birth; maternal, child, and family health; reproductive
biology and population issues; and medical rehabilitation. For more
information, visit the Institute's website at <http://www.nichd.nih.gov/>.
About the National Institutes of Health (NIH): NIH, the nation's medical
research agency, includes 27 Institutes and Centers and is a component of
the U.S. Department of Health and Human Services. NIH is the primary federal
agency conducting and supporting basic, clinical, and translational medical
research, and is investigating the causes, treatments, and cures for both
common and rare diseases. For more information about NIH and its programs,
visit <www.nih.gov>.
NIH...Turning Discovery into Health -- Registered, U.S. Patent and Trademark
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This NIH News Release is available online at:
<http://www.nih.gov/news/health/sep2013/nichd-06.htm>.
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