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Opportunities for Families

CHARGE research could not take place without the participation of the families. There are many ways you can help. At any given time, there are many studies underway all over the world to help further understand many aspects of CHARGE and CHD7. Studies range from DNA analysis to clinical features and behavior to therapies and education. As these studies benefit our children, we encourage families to participate. A great way to start is to enter your child’s baseline information into the CHARGE database CSCDP.

All projects have been approved by Institutional Review Boards (IRB). If you have a project you would like posted, contact Meg Hefner meg@chargesyndrome.org.

CHARGE Syndrome Clinical Database Project (CSCDP)

Saint Louis University and the CHARGE Syndrome Foundation

Description: on-line collection of baseline information (prenatal–current) on individuals with CHARGE. Information you enter online will be used to help us understand more about CHARGE and will be shared with researchers so they do not need to ask you baseline questions over and over again. Parents or independent adults with CHARGE are invited to participate.
Enrollment dates: now enrolling, no end date set.

Contact: Meg Hefner charge-survey@slu.edu or hefnerma@slu.edu.

For More Information: CHARGE Database Information

DNA causes of CHARGE beyond CHD7

University of Michigan

Description: Not all cases of CHARGE syndrome are caused by mutations in the CHD7 gene. Your family is eligible if CHD7 testing was negative or has not been done. DNA will be analyzed to look for other possible CHARGE genes. Participation involves collecting and sending saliva samples (which will be used to extract DNA for analysis) on individuals with CHARGE, parents and siblings. Phone consent, collection kits mailed to you.
Enrollment dates: now enrolling, no end date set.

Contact: Donna Martin donnamm@med.umich.edu; Stephanie Bielas sbielas@med.umich.edu

For More Information: Martin DNA Study

IEP and IFSPs: Content, Process and Parent Impressions

Mississippi State University

Description: Investigation of what services are being provided to students with CHARGE syndrome and possible ways to improve the IEP process, including IEP goals, measurable skills, appropriate services, and accommodations. Eligible participants are a parent/guardian of a child with CHARGE syndrome with a current IEP/IFSP who resides in the U.S. Participation involves a brief survey and providing the project with a copy of the IEP/IFSP.
Enrollment dates: through December, 2016

Contact: Kasee Stratton, kstratton@colled.msstate.edu; Hailey Ripple her156@msstate.edu

For More Information: Stratton IEP Study

Tracking Feeding Progress in CHARGE

Dalhousie University and Mississippi State University

Description: We plan to creating a ‘feeding scale’ specific for CHARGE syndrome that parents and feeding therapists can use to track the progress of oral feeding and identify any problematic feeding behaviors in the individual with CHARGE syndrome over their entire life. Eligible participants are parents of individuals with CHARGE syndrome older than 1 year old. The individual with CHARGE syndrome cannot be 100% tube fed; a mix of tube feeding and oral feeding is allowed. Participation involves a short, 5-minute survey.
Enrollment dates: through December 2016

Contact: Alexandra Hudson alexandra.hudson@dal.ca

For More Information: https://surveys.dal.ca/opinio/s?s=30925

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CHARGE syndrome and CHD7 research.