The RDCRC is fully committed to employing the data sharing plan promulgated during the current funding period by the Steering Committee of the RDCRN supporting the transfer of data into an ORD-governed repository within five years of data accrual or publication of the primary study outcomes (see Appendix). We see this commitment as integral to engaging the larger research community in expanding knowledge on these disorders and enhancing the development of effective treatment strategies.

Agency
National Institute of Health (NIH)
Institute
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Type
Specialized Center--Cooperative Agreements (U54)
Project #
5U54HD061222-09
Application #
8381946
Study Section
Special Emphasis Panel (ZRG1-HOP-Y)
Project Start
Project End
Budget Start
2012-08-01
Budget End
2013-07-31
Support Year
9
Fiscal Year
2012
Total Cost
$173,154
Indirect Cost
$11,305
Name
University of Alabama Birmingham
Department
Type
DUNS #
063690705
City
Birmingham
State
AL
Country
United States
Zip Code
35294
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Merkel, Peter A; Manion, Michele; Gopal-Srivastava, Rashmi et al. (2016) The partnership of patient advocacy groups and clinical investigators in the rare diseases clinical research network. Orphanet J Rare Dis 11:66
Percy, Alan K (2016) Progress in Rett Syndrome: from discovery to clinical trials. Wien Med Wochenschr 166:325-32
Shivers, Carolyn M; Leonczyk, Caroline L; Dykens, Elisabeth M (2016) Life Satisfaction Among Mothers of Individuals with Prader-Willi Syndrome. J Autism Dev Disord 46:2126-37
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