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Research Opportunities

The following studies and trials are enrolling patients with M-CM / MCAP or related conditions.

A clinical trial, “A Phase 1/2 Study of ARQ 092 in Patients with Overgrowth Diseases and Vascular Anomalies with Genetic Alterations of the PI3K/AKT Pathway” is enrolling at Boston Children's Hospital. You may also contact Yvonne Sheldon, RN, BSN at Boston Children’s Hospital at 617-919-6299 or  yvonne.sheldon@childrens.harvard.edu. See this trial's entry on ClinicalTrials.gov for full details.

Research on megalencephaly conditions is being conducted by Dr. Ghayda Mirzaa at the Center for Integrative Brain Research at Seattle Children's Research Institute. If you're interested, please contact the research coordinator at brainresearch@seattlechildrens.org for more information.

In the United Kingdom, research is being conducted through the Segmental Overgrowth Study, contact information can be found on the study's website.

The National Human Genome Research Institute at the National Institutes of Health in the United States is conducting research on overgrowth conditions. This group may accept samples from patients in the US or other countries.  Contact Ashlyn Gruber at ashlyn.gruber@nih.gov or 301-435-6689 for more information and eligibility information.