Down Syndrome Research Consortium Meets at NIH

RDS President Bob Schoen attended the meeting of the Down Syndrome Research Consortium in Maryland on July 23. Members of the consortium, which represents the NIH, clinical researchers, Ds advocacy and research foundations and self-advocates, discussed the status of the contact registry development project. It was disclosed at the meeting that National Institute of Child Health and Human Development(NICHD) was able to secure $250,000 in funding to develop this web based national registry. This registry will be a site to collect basic health information on potential participants in Down syndrome related clinical trials. Keep an eye out for our next newsletter which will provide more details, including timing of this project.

The consortium also discussed that, as recogniezed by NICHD, the Down Syndrome Research Plan released in 2007 is now in need of evaluation and updating.  As part of this process, NICHD and the Trans-NIH Down Syndrome Working Group will be requesting comment from the public concerning the effectiveness of the Plan, its accomplishments, and its remaining gaps, and will welcome suggestions concerning new future research objectives.

RDS participated in the Down Syndrome Research Consortium held in July. Members of the consortium, who represent the NIH, clinical researchers, Ds advocacy and research foundations and self-advocates, discussed the status of the contact registry project. It was disclosed at the meeting that the National Institute of Child Health and Human Development(NICHD) was able to secure $250,000 in funding to develop this web based national registry. This registry will be a site to collect basic health information on potential participants in Down syndrome related clinical trials. Keep an eye out for our next newsletter which will provide more details, including the timing for this project.

The consortium also discussed that, as recognized by NICHD, the Down Syndrome Research Plan released in 2007 is now in need of evaluation and updating.  As part of this process, NICHD and the Trans-NIH Down Syndrome Working Group will be requesting comment from the public concerning the effectiveness of the Plan, its accomplishments, and its remaining gaps, and will welcome suggestions concerning new future research objectives.