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FaceBase Biorepository: Overview. Goal: To create a biorepository of samples from patients with craniofacial anomalies to serve as a resource for investigators studying these disorders Collect biological samples and data from 5,000 individuals. FaceBase Biorepository: Methods.
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FaceBase Biorepository:Overview • Goal: To create a biorepository of samples from patients with craniofacial anomalies to serve as a resource for investigators studying these disorders • Collect biological samples and data from 5,000 individuals
FaceBase Biorepository:Methods • Recruit and Enroll participants • Collect biological samples and data • Pedigree • Medical history • Pregnancy history (teratogenic exposures) • Pictures
FaceBase Biorepository:Methods • Make samples available to other researchers • Investigator submits a Protocol Proposal for use of specimens and fills out a Usage Agreement • Data Access Committee (DAC) reviews proposal • Proposal is either accepted or denied • If proposal is accepted sample and data are transferred to investigator
FaceBase Biorepository:Timeline • Progress • Obtained IRB approval from the University of Iowa • Obtained a Certificate of Confidentiality • Future • Awaiting review by NIDCR’s Clinical Study Oversight Committee (CSOC) • Then start enrolling participants • Make samples and data available to investigators • Need to discuss priorities and recruitment strategies