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Research - History

The first cases of what is now known as CHARGE syndrome were published in 1979. Between 1979 and 1985 little research was done. In 1985 there were six articles published. In 2005, there were 33, thanks in part to a special issue of the American Journal of Medical Genetics 133A(5), which was devoted to CHARGE syndrome. Since then more research has been conducted and published. In July 2010 CHARGE Syndrome: A Volume in the Genetics and Communication Disorders Series was published by Plural Publishing, edited by Timothy S. Hartshorne, Margaret A. Hefner, Sandra L. H. Davenport, and James W. Thelin. This volume summarizes   research performed between 1979 and 2009 that spans the full spectrum of CHARGE syndrome’s impact on the physical, emotional, behavioral, and intellectual lives of those born with CHARGE and their families.  We are pleased to advise that there are now dozens of research projects which involve CHARGE syndrome.  Despite increased interest in CHARGE, much more research is needed to better understand the causes, treatment and management of this complex syndrome. 

The CHARGE  Syndrome Foundation is dedicated to the support and promotion of scientific and clinical research.  A Scientific Advisory Board has been established to provide the Foundation with advice and guidance on the review, administration and implementation of scientific research grants.  Our Research Committee concentrates its efforts on clinical and survey-based research projects.  Together, the Scientific Advisory Board and Research Committee hope to promote and fund increased research in CHARGE.  

Scientific Advisory Board

The Scientific Advisory Board (SAB) was established in 2011 to serve as a scientific resource, assisting in the identification, funding and development of scientific research projects.  The formation of this new advisory board demonstrates our commitment to high quality scientific research.  Members of SAB consist of leading scientists and medical doctors with extensive research experience.  We are fortunate to have such a wealth of knowledge and experience help guide the Foundation.

The SAB is chaired by Donna Martin, MD, Phd.  Other members are Brian Brooks, MD PhD, Daniel Marenda, PhD and Peter Scacheri, PhD.

Pilot Grants

The CHARGE Syndrome Foundation is now taking applications for pilot grants, which range in value between $25,000 and $50,000.  All grant applicants will be reviewed by the SAB.  For more details on the application process, please download the Request for Proposal.  The deadline for applications is March 1, 2012, with grants being awarded on May 1, 2012.

Research Committee

The Research Committee (RC) was formed in 2009.  Its primary purpose is to review survey-based and clinical research proposals.  The RC also helps connect researchers with appropriate information and/or participants.  In addition, the RC helps keep track of existing research and advises the membership of  new developments, research studies and research related information.

The RC is chaired by Ms. Meg Hefner, Genetic Counselor, Associate Professor Saint Louis University, Special Advisor, CHARGE Syndrome Foundation. Membership currently consists of members of the Foundation who have an interest in encouraging and expediting research projects that support the mission of the Foundation. The membership consists of parents and professionals and is open to any member of the Foundation.

 

CHARGE Syndrome Foundation Request for Proposal

The Research Committee published its initial version of a formal (RFP) in October 2010. We invite professionals interested in performing research related to CHARGE Syndrome to download this
RFP and submit a proposal.

 

Current Research Projects Approved by Board

 

Known Independent Research

 

Past Research

Click on the link below to review a summary list of research presented at the 2007 and 2009 conferences.

Topics for Consideration for Future Research for CHARGE syndrome

Click on the link below to review a list of suggested topics.