Scant funding threatens the implementation of a broad agenda

From American Medical News (the newspaper of the American Medical Association):

The National Institutes of Health has released an ambitious research agenda on Down syndrome, with ten-year objectives that cover disease progression, diagnosis and screening, as well as treatment and management. The agenda is not accompanied by funding.

“Down syndrome is the most common chromosomal condition that mankind has, yet surprisingly, the NIH, the [Centers for Disease Control and Prevention] and the national Down syndrome movement have never had a focused research agenda,” said [Brian Skotko, MD, a pediatrician at Children's Hospital in Boston and a long-time advocate for people with the syndrome, including his sister]. This circumstance has occurred despite the fact that other disability and medical conditions that occur in far fewer people have such agendas, he added.

But the funds needed to carry out these agendas are missing, all concurred. NIH funding for Down syndrome research has decreased from $23 million in fiscal 2003 to $17 million in 2008, Dr. Skotko noted. In comparison, autism research, which should remain intact, he stressed, is funded at $128 million for this year.

In addition to the lack of funds, the lack of a national registry of people with Down syndrome also is obstructing progress, Dr. Skotko said.

The research agenda effort was led by the National Institute of Child Health and Human Development, which sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; and medical rehabilitation. The report is available here.

This entry was posted on Sunday, March 2nd, 2008 at 9:52 am and is filed under Down syndrome, medicine, research funding, research news. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.