Landscape analysis of registries and biobanks: A tool for disease advocacy organizations to enhance translational research systems

Biopreservation and Biobanking

Volumn 8, Issue 2, 2010, Pages 115-117

  Horn, Elizabeth J ^a   Bialick, Jim F ^a   Terry, Sharon F ^a  

^a GENETIC ALLIANCE   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; BIBLIOGRAPHIC DATABASE; BIOBANK; CLINICAL DATA REPOSITORY; DISEASE REGISTRY; HEALTH CARE FACILITY; HEALTH CARE ORGANIZATION; HEALTH SURVEY; PRIORITY JOURNAL; QUALITY CONTROL; SAMPLING;

EID: 77956147911     PISSN: 19475535     EISSN: 19475543     Source Type: Journal    
DOI: 10.1089/bio.2010.0007     Document Type: Article

References (7)

1. Terry SF, Boyd CD. Researching the biology of PXE: partnering in the process. Am J Med Genet. 2001;106:177-184.
2. Marshall BC, Penland CM, Hazle L et al. Cystic fibrosis foundation: achieving the mission. Respir Care. 2009;54:788-795.
3. Terry SF, Terry PF, Rauen KA et al. Advocacy groups as research organizations: the PXE International example. Nat Rev. 2007;8: 157-164.
4. Eiseman E, Bloom G, Brower J et al. Case studies of existing human tissue repositories: "best practices" for a biospecimen resource for the genomic and proteomic era. http://www.rand.org/pubs/monographs/2004/RAND-MG120. pdf. Accessed April 2, 2010.
5. Pitt KE, Cambell LD, Skubitx APN et al. 2008 Best practices for repositories: collection, storage, retrieval and distribution of biological materials for research. Cell Preserv Technol. 2008;6:5-58.
6. OBBR. NCI best practices for biospecimen resources. http://biospecimens. cancer.gov/bestpractices/. Accessed April 2, 2010.
7. HITECH act. http://www.govtrack.us/congress/bill.xpd?bill ¼ h111-1. Accessed March 3, 2010.