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Data sharing in the undiagnosed diseases network.

Publication ,  Journal Article
Brownstein, CA; Holm, IA; Ramoni, R; Goldstein, DB; Members of the Undiagnosed Diseases Network,
Published in: Hum Mutat
October 2015

The Undiagnosed Diseases Network (UDN) builds on the successes of the Undiagnosed Diseases Program at the National Institutes of Health (NIH UDP). Through support from the NIH Common Fund, a coordinating center, six additional clinical sites, and two sequencing cores comprise the UDN. The objectives of the UDN are to: (1) improve the level of diagnosis and care for patients with undiagnosed diseases through the development of common protocols designed by an enlarged community of investigators across the network; (2) facilitate research into the etiology of undiagnosed diseases, by collecting and sharing standardized, high-quality clinical and laboratory data including genotyping, phenotyping, and environmental exposure data; and (3) create an integrated and collaborative research community across multiple clinical sites, and among laboratory and clinical investigators, to investigate the pathophysiology of these rare diseases and to identify options for patient management. Broad-based data sharing is at the core of achieving these objectives, and the UDN is establishing the policies and governance structure to support broad data sharing.

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Published In

Hum Mutat

DOI

EISSN

1098-1004

Publication Date

October 2015

Volume

36

Issue

10

Start / End Page

985 / 988

Location

United States

Related Subject Headings

  • United States
  • Research Personnel
  • Rare Diseases
  • Phenotype
  • National Institutes of Health (U.S.)
  • Information Dissemination
  • Humans
  • Genotype
  • Genetics & Heredity
  • Disease Management
 

Citation

APA
Chicago
ICMJE
MLA
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Brownstein, C. A., Holm, I. A., Ramoni, R., Goldstein, D. B., & Members of the Undiagnosed Diseases Network, . (2015). Data sharing in the undiagnosed diseases network. Hum Mutat, 36(10), 985–988. https://doi.org/10.1002/humu.22840
Brownstein, Catherine A., Ingrid A. Holm, Rachel Ramoni, David B. Goldstein, and David B. Members of the Undiagnosed Diseases Network. “Data sharing in the undiagnosed diseases network.Hum Mutat 36, no. 10 (October 2015): 985–88. https://doi.org/10.1002/humu.22840.
Brownstein CA, Holm IA, Ramoni R, Goldstein DB, Members of the Undiagnosed Diseases Network. Data sharing in the undiagnosed diseases network. Hum Mutat. 2015 Oct;36(10):985–8.
Brownstein, Catherine A., et al. “Data sharing in the undiagnosed diseases network.Hum Mutat, vol. 36, no. 10, Oct. 2015, pp. 985–88. Pubmed, doi:10.1002/humu.22840.
Brownstein CA, Holm IA, Ramoni R, Goldstein DB, Members of the Undiagnosed Diseases Network. Data sharing in the undiagnosed diseases network. Hum Mutat. 2015 Oct;36(10):985–988.
Journal cover image

Published In

Hum Mutat

DOI

EISSN

1098-1004

Publication Date

October 2015

Volume

36

Issue

10

Start / End Page

985 / 988

Location

United States

Related Subject Headings

  • United States
  • Research Personnel
  • Rare Diseases
  • Phenotype
  • National Institutes of Health (U.S.)
  • Information Dissemination
  • Humans
  • Genotype
  • Genetics & Heredity
  • Disease Management