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Frequently Asked Questions
A. To learn about craniosynostosis, click here: What is Craniosynostosis?
A. Participants will include patients of newborn to adult age and their parents, both sexes, and any racial and ethnic group. When both parents are not available, siblings or other relatives might be recruited. If multiple individuals have craniosynostosis in a family, many affected and unaffected family members might be recruited.
A. Each recruitment site will identify potential patients that may be eligible to participate in the study.
A. The consent process will include an explanation of the study and what is expected of the subject’s participation. The subject and his/her biological parents will be provided sufficient opportunity to review the consent form and ask any questions. The subject, or subject’s parent if minor (less than 18 years old), must sign the study consent form prior to providing a genetic sample. The research coordinator (or designee) will discuss the Study with eligible subjects during their office visit (new cases) or over the phone (old cases). Subjects will be considered enrolled into the Craniosynostosis Network project only after the written informed consent is obtained and the genetic sample is collected.
A. Patients who agree to participate in this study would provide blood, saliva or buccal (inside of the cheek) samples. The subject must not smoke, eat, chew gum or drink anything 30 minutes prior to saliva collection. If blood sample is collected then there are no limitations in what a subject can eat or drink. The subject will be instructed to gather saliva in his/her mouth and spit into the collection container until the demarcation line is reached in the receptacle. Once the collection is complete, the research coordinator or designee will secure the subject study identification label to the collection container. For young subjects, buccal sponges will be used instead of saliva kits. In addition, Computed Tomography (CT) scan images of the head, and, when available, discarded bone and skin tissues will be collected. Also, parent/guardian of the patient will fill out questionnaires using RedCap. A link to the online exposure questionnaire will be emailed to the parents of the affected child and filled out at home.
A. No, being in this research study will not lead to extra costs to you.
A. No, you will not be paid for participating in the research study.
A. It is important to know that you may not get any benefit from taking part in this research. Others may not benefit either. However, possible benefits may that this study may provide a better understanding of what causes craniosynostosis, and your taking part in this study may help others in the future.