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FaceBase Biorepository

J

Jeff Murray

Status

Completed

Conditions

Cleft Palate
Cleft Lip
Craniofacial Abnormalities

Study type

Observational

Funder types

Other
NIH

Identifiers

NCT01252264
200912764
U01DE020057 (U.S. NIH Grant/Contract)

Details and patient eligibility

About

The purpose of this study is to find out if there are any genetic differences between people with and without disorders of the head, face, and eye. We will create a biorepository of samples from people with and without these types of birth defects. A biorepository is a collection or "bank" of human tissue materials (such as blood or saliva) for research purposes. These samples will then be available to investigators studying these disorders.

Full description

Samples from the FaceBase Biorepository and data collected from these samples will be available to investigators who are studying birth defects of the head, face, and eye. Data and samples will be deidentified prior to use by other investigators. Researchers will be allowed to use samples and medical information only after approval by the FaceBase Biorepository Data Access Committee. Once the FaceBase Biorepository Data Access Committee has established that the proposed use of the samples and clinical data meet the criteria for sound, ethical research, then the investigator will be granted permission to use a small portion of the sample and have access to clinical data stored in the computer database. Investigators who are not part of the FaceBase Biorepository Research Team will not know participant's names or other personally identifiable information.

Enrollment

5,000 patients

Sex

All

Ages

Under 125 years old

Volunteers

Accepts Healthy Volunteers

Inclusion criteria

  • English speaking
  • Individual with a craniofacial anomaly or family member of an individual with a craniofacial anomaly

Exclusion criteria

  • Non-English speaking
  • Prisoners
  • Minors in foster care or wards of the court

Trial design

5,000 participants in 2 patient groups

Individuals with craniofacial anomalies
Description:
Individuals who have a craniofacial anomaly (head, face, or eye disorder)
Control Subjects
Description:
Family members of individuals with a craniofacial anomaly

Trial contacts and locations

1

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Data sourced from clinicaltrials.gov

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