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FaceBase Biorepository | FaceBase

FaceBase Biorepository

Biorepository samples are still available

Although the FaceBase Biorepository is now closed, samples collected as part of the FaceBase Biorepository are available to researchers interested in collaborating with the University of Iowa on projects focusing on genetics and Craniofacial conditions. To learn more about available samples and sample access please contact cleftresearch@uiowa.edu or Jeff Murray, jeff-murray@uiowa.edu.

Access to the FaceBase Biorepository specimens and associated data is intended only for scientific investigators, who are pursuing research questions that are related to understanding craniofacial birth defects and identifying genetic factors responsible for causing such diseases and disorders. For more information please view the Protocol for Biorepository Sample Access.

The following is the original overview of the Biorepository:

Overview

The FaceBase Biorepository is currently collecting biological samples from individuals with craniofacial disorders or defects along with their family members.

Information for Prospective Cases: Clefts of the lip and/or palate can be caused by a wide range of genetic, environmental and other factors. The FaceBase Biorepository will serve as a common source of both biological samples and information that can be made available to investigators trying to determine the underlying cause of these common birth defects. Genetic studies, in particular, will benefit from both family history information and having samples from affected individuals as well as their family members. DNA is the information containing molecules found in all the cells of our body and can be easily obtained from material such as blood or saliva samples. As part of the FaceBase Biorepository, we are requesting families to submit biological samples from specific family members as well as information from other family members that might be affected with either the same condition or a similar condition. The medical and family history information that is collected includes other relevant information such as exposure to possible environmental causes during pregnancy.

The biorepository is managed by Jeff Murray, a pediatric clinical geneticist and researcher. He is available to speak with family members regarding questions they may have, including providing information about the biorepository and making arrangements for the collection of samples for those who wish to participate. All participation is voluntary. Your name or other personally identifiable information (name, address, etc) will be removed before information is placed in the biorepository. Summary data to show how the database itself has been used overall as well as updates on whether specific findings might have been made using this database will be available on the FaceBase website at www.facebase.org. A newsletter containing this information will also be given to families and referring clinicians so that they may discuss the specifics with the families if there appears to be information that might be relevant in a particular case. Families will also need to sign a consent form that has been approved by the Institutional Review Board at the University of Iowa. Also, any submitted samples or data can also be removed from the database at any time should the family no longer wish to participate.