ArticleJournal of the American Medical Informatics Association : JAMIA
Using global unique identifiers to link autism collections.
Article in Journal of the American Medical Informatics Association : JAMIA. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 40 papers, 1 of them a synthesis that pooled it.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
40 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Case-control meta-analysis of blood DNA methylation and autism spectrum disorder.Molecular autism · 2018Pooled it
- Families Moving Forward Connect mHealth Intervention for Caregivers of Children With Fetal Alcohol Spectrum Disorders: Randomized Controlled Trial.JMIR mHealth and uHealth · 2026Trial
- Novel use of a hash-based tokenization for sharing sickle cell disease data without sharing protected health information.Blood advances · 2026Article
- Access for ALL in ALS: A large-scale, inclusive, collaborative consortium to unlock the molecular and genetic mechanisms of amyotrophic lateral sclerosis.Muscle & nerve · 2024Review
- The Brain Gene Registry: a data snapshot.Journal of neurodevelopmental disorders · 2024Article
- NIH HEAL Clinical Data Elements (CDE) implementation: NIH HEAL Initiative IMPOWR network IDEA-CC.Pain medicine (Malden, Mass.) · 2023Article
- Article
- Record linkage of population-based cohort data from minors with national register data: a scoping review and comparative legal analysis of four European countries.Open research Europe · 2021Article
- CANDIDATE: A tool for generating anonymous participant-linking IDs in multi-session studies.PloS one · 2021Article
- A hybrid approach to record linkage using a combination of deterministic and probabilistic methodology.Journal of the American Medical Informatics Association : JAMIA · 2020Article
- TRC-PAD: Accelerating Recruitment of AD Clinical Trials through Innovative Information Technology.The journal of prevention of Alzheimer's disease · 2020Article
- Cardiac Biomarkers in Pediatric Cardiomyopathy: Study Design and Recruitment Results from the Pediatric Cardiomyopathy Registry.Progress in pediatric cardiology · 2019Article
- Big data sharing and analysis to advance research in post-traumatic epilepsy.Neurobiology of disease · 2019Review
- Integrative LHS for precision medicine research: A shared NIH and Taiwan CIMS experience.Learning health systems · 2019Article
- Development of an informatics system for accelerating biomedical research.F1000Research · 2019Article
- Federating patients identities: the case of rare diseases.Orphanet journal of rare diseases · 2018Article
- Can data repositories help find effective treatments for complex diseases?Progress in neurobiology · 2017Review
- Checking Questionable Entry of Personally Identifiable Information Encrypted by One-Way Hash Transformation.JMIR medical informatics · 2017Article
- Article
- The risk of re-identification versus the need to identify individuals in rare disease research.European journal of human genetics : EJHG · 2016Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
Abstract
objectiveTo propose a centralized method for generating global unique identifiers to link collections of research data and specimens.
designThe work is a collaboration between the Simons Foundation Autism Research Initiative and the National Database for Autism Research. The system is implemented as a web service: an investigator inputs identifying information about a participant into a client application and sends encrypted information to a server application, which returns a generated global unique identifier. The authors evaluated the system using a volume test of one million simulated individuals and a field test on 2000 families (over 8000 individual participants) in an autism study. MEASUREMENTS: Inverse probability of hash codes; rate of false identity of two individuals; rate of false split of single individual; percentage of subjects for which identifying information could be collected; percentage of hash codes generated successfully.
resultsLarge-volume simulation generated no false splits or false identity. Field testing in the Simons Foundation Autism Research Initiative Simplex Collection produced identifiers for 96% of children in the study and 77% of parents. On average, four out of five hash codes per subject were generated perfectly (only one perfect hash is required for subsequent matching). DISCUSSION: The system must achieve balance among the competing goals of distinguishing individuals, collecting accurate information for matching, and protecting confidentiality. Considerable effort is required to obtain approval from institutional review boards, obtain consent from participants, and to achieve compliance from sites during a multicenter study.
conclusionGeneric unique identifiers have the potential to link collections of research data, augment the amount and types of data available for individuals, support detection of overlap between collections, and facilitate replication of research findings.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.