RESEARCH PARTICIPATION OPPORTUNITIES

Why Participate?

Patients' needs and involvement directly influence research project direction and success. KSF supports researchers who seek to improve the quality of life for individuals with KS. To improve the quality of life for KS patients, patients and their families must support researchers.

Without research, you wouldn't be here. You wouldn't have a diagnosis. To learn more about the role patients play in Kabuki syndrome research, check out this video clip by Dr. Brittany Simpson on How the patient experience shapes research endeavors.  

We know your time is valuable, but your participation is critical.

Click on the links below to learn how you can participate in Kabuki syndrome research.

 
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Dr. Jacqueline Harris, MD, at Kennedy Krieger Institute/Johns Hopkins Medical Institution, specializes in neurologic and cognitive manifestations in Kabuki Syndrome. You can participate from home and/or in Baltimore, Maryland with Dr. Harris and Research Coordinator Jennifer Johnson. Click the orange links to learn more. 

 

Dr. Harris is the director of Kabuki Syndrome Services at Kennedy Krieger and the Principle Investigator of these studies.

 

Email ​harrisjac@kennedykrieger.org or johnsonjen@kennedykrieger.org or call 667-205-4295 for questions or to get started.

 

Dr. Olaf Bodamer, MD, PhD, co-directs the Roya Kabuki Syndrome Program at Boston Children's Hospital. This multidisciplinary and patient-centered initiative is focused on finding treatments for children and adults with KS. You can participate from home and/or in Boston, Maryland with Dr. Bodamer and Program Coordinator Rachel Gottlieb. Click on the orange links to learn more.

Email kabuki@childrens.harvard.edu or call 857-218-5254 for questions or to get started.

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Dr. Brittany Simpson, MD, at Cincinnati Children's Hospital conducts research studies designed to better understand the natural history of Kabuki syndrome and to identify targets for treatment outcomes. Participate from home and/or in Cincinnati, Ohio. Click the orange link to learn more.

Dr. Simpson is the Director of the Epigenetic Syndromes Clinic at CCHMC, which cares for patients with KS and other epigenetic syndrome through interdisciplinary specialization. 

Email epigenetics@cchmc.org or brittany.simpson@cchmc.org for questions or to participate.

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