Invitation For Participation In A Research Study
We are researchers from the International Craniosynostosis Consortium. Our research involves studying the causes of craniosynostosis and the ultimate goal is to identify genes and enviromental factors causing this condition.
We are recruiting families with at least one child with craniosynostosis. If they agree to participate each family member will need to sign a consent form. We will arrange for a clinical examination and blood samples collection from the child and his or her biological parents. These samples will be prepared so that we will not need another sample in the future. The families will not benefit directly, but we hope by learning about the causes of craniosynostosis that some day we will be able to provide better care to craniosynostosis patients. The results of our study will be published, but the participants will be coded by identification number and will remain anonymous.
These families will also be asked to participate in a survey, designed to identify environmental factors that may be causing craniosynostosis. All responses to the questionnaire will be kept confidential. There will be no charges to participate in the study.
Please contact Dr. Simeon Boyd, M.D. to inquire about our study, or to make arrangements for participation.