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 #
5U54HD061222-10
Application #
8539392
Study Section
Special Emphasis Panel (ZRG1-HOP-Y)
Project Start
Project End
Budget Start
2013-08-01
Budget End
2014-07-31
Support Year
10
Fiscal Year
2013
Total Cost
$164,470
Indirect Cost
$10,710
Name
University of Alabama Birmingham
Department
Type
DUNS #
063690705
City
Birmingham
State
AL
Country
United States
Zip Code
35294
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Pinto, Anna L R; Fernández, Iván S; Peters, Jurriaan M et al. (2014) Localization of sleep spindles, k-complexes, and vertex waves with subdural electrodes in children. J Clin Neurophysiol 31:367-74
Gold, June-Anne; Ruth, Chelsey; Osann, Kathryn et al. (2014) Frequency of Prader-Willi syndrome in births conceived via assisted reproductive technology. Genet Med 16:164-9
Khare, Manaswitha; Gold, June-Anne; Wencel, Marie et al. (2014) Effect of genetic subtypes and growth hormone treatment on bone mineral density in Prader-Willi syndrome. J Pediatr Endocrinol Metab 27:511-8
Neul, Jeffrey L; Lane, Jane B; Lee, Hye-Seung et al. (2014) Developmental delay in Rett syndrome: data from the natural history study. J Neurodev Disord 6:20
Dykens, Elisabeth M (2014) Leisure activities in Prader-Wili syndrome: implications for health, cognition and adaptive functioning. J Autism Dev Disord 44:294-302
Percy, Alan (2014) The American history of Rett syndrome. Pediatr Neurol 50:1-3
Killian, John T; Lane, Jane B; Cutter, Gary R et al. (2014) Pubertal development in Rett syndrome deviates from typical females. Pediatr Neurol 51:769-75
Cuddapah, Vishnu Anand; Pillai, Rajesh B; Shekar, Kiran V et al. (2014) Methyl-CpG-binding protein 2 (MECP2) mutation type is associated with disease severity in Rett syndrome. J Med Genet 51:152-8
Fernandez, Ivan Sanchez; Chapman, Kevin E; Peters, Jurriaan M et al. (2013) The tower of Babel: survey on concepts and terminology in electrical status epilepticus in sleep and continuous spikes and waves during sleep in North America. Epilepsia 54:741-50

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