Research Registries, Epidemiological Database Services, and Database Mining
Core B’s clinical research registries and State of Tennessee epidemiological databases facilitate IDD translational research.
Autism Research Registry
The Vanderbilt Autism Research Registry uses the secure, web-based REDCap platform to capture detailed diagnostic, phenotypic, demographic, and other test data for children with ASD served by Vanderbilt Medical Center/VKC/TRIAD clinics and research projects, as well as willing families enrolled in federal or foundation-supported research programs (e.g., Autism Speaks, Simons Foundation).
Contact: Alison Vehorn, M.S.
Down Syndrome Clinic Registry
Managed by Developmental Medicine, this clinic provides medical evaluations, educational, behavioral, genetics, and nutritional counseling, and recommendations for therapies. With IRB approvals and informed consent processes, families to given opportunity to have de-identified clinical data used for research purposes. DNA extracted from blood samples is stored in BioVU for later mining. Families also are informed about the NICHD DS-Connect Registry . The Clinic Director shares requests with families and posts study opportunities on the Clinic website. With IRB approval, investigators may request de-identified data for hypothesis generation or manuscripts.
Contact: Tracy McGregor, M.D., Down Syndrome Clinic Director
Linked State of Tennessee Epidemiological Datasets
This service provides investigators access to multiyear data from the State of Tennessee that can be linked by families or individuals across all birth, death, marriage, divorce, and hospital discharge records. These data enable investigators to complement or to extend clinical studies by posing questions best answered by epidemiological data. The Core has developed Coupler, an open-source software application for linking records within and among large-scale datasets; and a practical guide for using large, secondary databases. Investigators consult to identify additional linkage as needed to create customized data sets.
Contact: Richard Urbano, Ph.D.
If you make use of these services or facilities, please acknowledge this support in publications, as required by the EKS NICHD.
Sample: "Research supported in this publication was supported by the EKS NICHD of the NIH under Award #U54HD083211. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH."