Families, researchers and advocacy organizations are joining forces with the National Institutes of Health on a new consortium to further Down syndrome research.

The group, established in late September, will meet two to three times annually to discuss the current state of medical and behavioral research on the chromosomal disorder, federal officials say.

Most significantly, the consortium will focus on implementing the NIH Down syndrome research plan, with sets goals for study of the developmental disability.

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“The consortium will allow NIH to inform the Down syndrome community of advances in the field, ongoing studies and potential avenues for future research,” said Yvonne Maddox, deputy director of the NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development, which is heading up the new cooperative. “In turn, those who work in Down syndrome research and patient care can share their experiences and ideas for potential research opportunities with NIH.”

Individuals with Down syndrome in addition to family members, representatives of leading Down syndrome and pediatric groups as well as members of the NIH Down Syndrome Working group will be included, officials said.

Bringing these stakeholders together, Maddox indicated, will allow those in the field to exchange ideas and minimize duplication of research efforts.

The new Down syndrome consortium bares some resemblance to the Interagency Autism Coordinating Committee, or IACC, an advisory committee established by Congress in 2006 that’s tasked with establishing federal autism research priorities. However, the Down syndrome group will not have the same level of authority.

Down syndrome advocates have long questioned a lack of funding for research on the condition. The NIH allocated $28 million to study Down syndrome last year, $6 million of which came from economic stimulus efforts. Meanwhile, more than three times as much went toward cystic fibrosis research, even though that condition affects just 30,000 Americans compared to some 400,000 with Down syndrome.

This summer, U.S. Rep. Cathy McMorris Rodgers, R-Wash., whose son has Down syndrome, introduced legislation designed to address the inequity by increasing federal funding for study of the condition. But so far, the bills have attracted little attention from Congress.

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