Using global unique identifiers to link autism collections

Journal of the American Medical Informatics Association

Volumn 17, Issue 6, 2010, Pages 689-695

  Johnson, Stephen B ^a,b   Whitney, Glen ^b   McAuliffe, Matthew ^c   Wang, Hailong ^c   McCreedy, Evan ^c   Rozenblit, Leon ^d   Evans, Clark C ^d  

^a Och Spine at New York Presbyterian Hospitals   (United States)

^b FLATIRON INSTITUTE   (United States)

^c NATIONAL INSTITUTES OF HEALTH   (United States)

^d Prometheus Research LLC   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; AUTISM; CLIENT SERVER APPLICATION; CONFIDENTIALITY; DATA BASE; FAMILY; FIELD STUDY; GLOBAL UNIQUE IDENTIFIER; HUMAN; INFORMATION TECHNOLOGY; INTERNET; MAJOR CLINICAL STUDY; MEDICAL RESEARCH; MOTIVATION; PARENT; PROBABILITY; SIMULATION;

AUTISTIC DISORDER; BIOMEDICAL RESEARCH; CHILD; CONFIDENTIALITY; DATABASES, FACTUAL; HUMANS; INFORMATION SERVICES; INFORMATION STORAGE AND RETRIEVAL; MEDICAL RECORD LINKAGE; PATIENT IDENTIFICATION SYSTEMS; UNITED STATES; USER-COMPUTER INTERFACE;

EID: 78650465691     PISSN: 10675027     EISSN: 1527974X     Source Type: Journal    
DOI: 10.1136/jamia.2009.002063     Document Type: Article

References (18)

1. Abrahams BS, Geschwind DH. Advances in autism genetics: on the threshold of a new neurobiology. Nat Rev Genet 2008;9:341-55.
2. Chanock SJ, Manolio T, Boehnke M, et al. Replicating genotype-phenotype associations. Nature 2007;447:655-60.
3. Geschwind DH, Sowinski J, Lord C, et al. The autism genetic resource exchange: a resource for the study of autism and related neuropsychiatric conditions. Am J Hum Genet 2001;69:463-6.
4. Hu-Lince D, Craig DW, Huentelman MJ, et al. The Autism Genome Project: goals and strategies. Am J Pharmacogenomics 2005;5:233-46.
5. Haroutunian V, Pickett J. Autism brain tissue banking. Brain Pathol 2007;17:412-21.
6. National Database for Autism Research, National Institute of Mental Health. September 28, 2009. http://ndar.nih.gov.
7. Simons Foundation Autism Research Initiative, Simons Foundation. September 28, 2009. http://sfari.org.
8. Leufkens HJ, van Delden JJ. Ethical aspects of epidemiological research. In: Ahrens W, Pigeot I, eds. Handbook of epidemiology. Berlin: Springer, 2005.
9. Mcmurry AJ, Gilbert CA, Reis BY, et al. A self-scaling, distributed information architecture for public health, research, and clinical Care. J Am Med Inform Assoc 2007;14:527-33.
10. Record Locator Service. The Connecting for Health Common Framework. September 28, 2009. http://www.connectingforhealth.org.
11. Churches T. A proposed architecture and method of operation for improving the protection of privacy and confidentiality in disease registers. BMC Med Res Methodol 2003;6:1.
12. Kruse RL, Ewigman BG, Tremblay GC. The Zipper: a method for using personal identifiers to link data while preserving confidentiality. Child Abuse Negl 2001;25:1241-8.
13. Segre AM, Wildenberg A, Vieland V, et al. Privacy-Preserving Data Set Union. In: Domingo-Ferrer J, Franconi L, eds. Privacy in Statistical Databases. Berlin: Springer-Verlag, 2006:266-76.
14. Quantin C, Fassa M, Coatrieux G, et al. Combining hashing and enciphering algorithms for epidemiological analysis of gathered data. Methods Inf Med 2008;47:454-8.
15. Wjst M. Anonymizing personal identifiers in genetic epidemiologic studies. Epidemiology 2005;16:131.
16. Schnell R, Bachteler T, Reiher J. Privacy-preserving record linkage using Bloom filters. BMC Med Inform Decis Mak 2009;9:41.
17. Keator DB, Grethe JS, Marcus D, et al. A national human neuroimaging collaboratory enabled by the Biomedical Informatics Research Network (BIRN). IEEE Trans Inf Technol Biomed 2008;12:162-72.
18. Kingsbridge Marketing Partners, Inc. 23801 Calabasas Road, Suite 102, Calabasas, CA 91302.