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February 20, 2008
Craniosynostosis Research Seeks Participants
We received the following announcement that might be of interest to some readers.
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We are researchers studying the causes of craniosynostosis and our ultimate goal is to identify genes and environmental factors causing this condition. This project includes collaborators from Johns Hopkins University, Children’s Hospital Boston (Dr. Mark Proctor, Dr. Johns Meara and Dr. John Mulliken), University of California Irvine (Dr. Virginia Kimonis), University of Oklahoma (Dr. Jayesh Panchal), Washington University in St. Louis (Dr. Alex Kane and Dr. Jeff Marsh). We are also collaborating with researchers from the United Kingdom, Brazil and Germany and our current study group includes more than 400 families.
We are continuing to 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.
You can register for the study and complete the consent forms and the epidemiologic questionnaire online through our research web site:
http://www.ucihs.uci.edu/pediatrics/drkimonis/craniosynostosis/index.shtml
Please contact:
* Alisara Ateerat (alisara@genetic-counseling.org) research coordinator and genetic counselor at UC Irvine, or
* Dr. Virginia Kimonis (vkimonis@hs.uci.edu).
For Northern California, please contact:
* Dr. Simeon Boyd (simeon.boyd@ucdmc.ucdavis.edu). or
* Ms. Erica Goude (erica.goude@ucdmc.ucdavis.edu), research coordinator .
Posted by pfa at February 20, 2008 07:22 PM