Craniofacial Biobank

NO additional procedures and NO additional visits! Your family’s decision to participate is 100% voluntary.

Your family will be approached by a study coordinator during your visit in one of the Children’s Hospital Colorado clinics. Our team will describe the objectives of the study and provide information about your potential participation in the Craniofacial Biobank. If you choose to participate, you will be asked to sign an approved Colorado Multiple Institutional Review Board (COMIRB) informed consent document.

Blood and typically discarded tissue samples are collected only during a standard of care procedure, making your child’s donation to the biobank simple and with no additional visits, pokes or procedures!

All tissue and blood are assigned a unique identifier, prepared by a coordinator, for storage and frozen for future studies. Research studies are designed to obtain genetic information about a specific craniofacial condition.

Human DNA is more than 99% identical between individuals. However, there are areas where our DNA is known to be different from those around us. These differences can be linked to important traits, such as the risk of inheriting a syndrome or the way the head, nose, or ears develop. By comparing a child’s DNA to the DNA of other children with and without similar conditions, we can find the parts that have been changed or mutated and may be responsible for causing the observed condition.

To better understand the cellular and molecular outcomes of the changed or mutated DNA we can look at another molecule called RNA, which is made from DNA, and carries the important instructions for building proteins needed for the proper functioning of cells in the body. Changes in RNA and protein expression levels can further help us understand what impacts the changed or mutated DNA may have on the developing body.

From these unique parts we can begin to understand how syndromes are passed down from parents to children, or why the nose, head, or other parts of the face develop differently. The more we know about these processes the more opportunities will become available for personalized diagnoses and treatments to help children with craniofacial conditions.

The Craniofacial Biobank will complement our non-invasive craniofacial image repository and represents one of the largest national initiatives for systematic pediatric data collection to study the causes and diversity of pediatric craniofacial disorders.

With these combined initiatives we can hope to create a personalized medicine program where we can use the unique patient’s genetic profile along with their image data to make surgical planning specific to each patient.

The safety of your child’s health information and sample is very important to us! We follow all federal privacy laws and health care regulations to protect your child’s information. The Craniofacial Biobank’s coordinator will discuss in detail how your child’s health information and sample could be used, shared and protected during your clinic visit.

Since blood and discarded tissues are collected only during a standard of care procedure there are no additional visits, pokes or procedures adding no unnecessary risks to your donation.

 

Brooke French, MD, (Principal Investigator), Associate Professor Division of Plastic and Reconstructive Surgery, Co-Director of Craniofacial Surgery Program, Director of Cosmetic Program

 

 

Antonio Porras, PhD (Co-Investigator), Assistant Professor Dept. Biostatistics & Informatics, Research Director, Pediatric Plastic & Reconstructive Surgery

 

 

Cristan Carter, (Study Coordinator/Primary Contact), Research Services Senior Professional, Division of Plastic and Reconstructive Surgery

 

Tamim Shaikh, PhD, (Committee Member), Professor Dept. Pediatrics Clinical Genetics and Metabolism, Director of Human Medical Genetics and Genomics Graduate Program

Allyson Alexander, MD, PhD (Committee Member) Assistant Professor Dept. Neurosurgery

Christopher Discolo, MD, (Committee Member), Associate Professor Dept. Otolaryngology – Head and Neck Surgery

Katherine Chin, DDS, (Committee Member), Clinical Associate Professor (C/T), Chair Pediatric Dentistry

Warren Bindford, JD, Ed.M, (Committee Member), Professor of Law, W.H. Lea for Justice Endowed Chair in Pediatric Law & Ethics & Policy, Director for Pediatric Law & Ethics & Policy at the Kempe Center