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RESEARCH

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AllStripes is the leading digital research platform for rare diseases and a KSF partner.

AllStripes will collect all your medical records at no cost. You will gain access to all your medical records, organized and in one place. Records will be de-identified and used by researchers in ongoing and future studies.

The first step is to sign up on their site. Registration takes 15 minutes.

Contact support@allstripes.com for questions or check out their FAQ.

Dr. Jacqueline Harris and her team focus on Kabuki syndrome research to prepare for clinical trials as they relate to cognitive and behavioral challenges of KS.

 

You can participate from home and/or in Baltimore, Maryland with Dr. Harris and Research Coordinator Jennifer Johnson. Read more about the studies here.

 

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 and team conduct research to define the natural history of KS, identify neurobehavioral outcome measures, and other efforts for clinical trials. 

You can participate from home and/or in Boston, Maryland with Dr. Bodamer and Program Coordinator Rachel Gottlieb. Read more about the studies here.

Dr. Bodamer is the co-director of the Roya Kabuki Program at Boston Children's.

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

Dr. Brittany Simpson is collecting data and samples to build the natural history of Kabuki syndrome and targets for clinical trials.

Participate from home and/or in Cincinnati, Ohio. Read more about the study here. 

Dr. Simpson is the Director of the Epigenetic Syndromes Clinic at CCHMC, which aims to improve patient care and follow-up through interdisciplinary specialization. 

Email

epigenetics@cchmc.org or

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

Are you up to date on the Oryzon clinical trial progress? Read the press release here and watch Oryzon's and Dr. Harris's 2021 KSF Research Conference Presentations here.

Visit our Research Opportunities page to learn more about each project and learn why your participation is key!

HOW CAN WE PARTICIPATE IN RESEARCH?

RESOURCES

Kabuki Syndrome

Clinics and Hospitals