Johns Hopkins Study

6905 Xandu Court

Fredericksburg, VA 22407

INVITATION FOR PARTICIPATION IN A RESEARCH STUDY

McKusick-Nathans Institute of Genetic Medicine
600 N. Wolfe St, CMSC 1004
Baltimore, MD 21287, USA

We are researchers at the Johns Hopkins Institute of Genetic Medicine. Our research involves studying the causes of craniosynostosis and the ultimate goal is to identify genes and environmental factors causing this condition.

We would like to invite the families that are associated with the Craniosynostosis support group CAPPS to participate in our study. 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 sample 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 cause for 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 participants in the study.

If you are interested in participating or if you have any questions regarding this study, please e-mail Dr. Simeon Boyd, M.D. (sboyd@mail.jhmi.edu) or Nisha Isaac, Genetic Counselor (nisaac1@jhmi.edu). You can also contact us by telephone at (410) 955-3071 or by post mail for additional information and to make arrangements.

Thank you for taking time to consider participation in this study.

Sincerely,

Simeon A. Boyadjiev Boyd, M.D.

Assistant Professor of Genetic Medicine and Pediatrics

Nisha Isaac, M.S., C.G.C.

Genetic Counselor/ Clinical Research Coordinator

Ethylin Wang Jabs, M.D.

Professor of Pediatric Genetics

Director, Center for Craniofacial Development and Disorders

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