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FaceBase Biorepository: Anomalies Study Resource

Aiming to build a biorepository for craniofacial anomaly research with samples from 5,000 individuals. Methods include participant recruitment, data collection, and sharing with researchers. Timeline involves approvals and future plans for sample availability for investigators.

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FaceBase Biorepository: Anomalies Study Resource

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  1. 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

  2. FaceBase Biorepository:Methods • Recruit and Enroll participants • Collect biological samples and data • Pedigree • Medical history • Pregnancy history (teratogenic exposures) • Pictures

  3. 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

  4. 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

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