RESEARCH STUDIES FOR MALAN SYNDROME

Principal investigator: Dr. Thomas Frazier

Research Institution: John Carroll University

Research Study Title: Development and Validation of a New Neurobehavioral Evaluation Tool for Malan Syndrome

Status: Active

Who can participate? All individuals, between the ages of 3 and 45, with a genetic diagnosis of Malan syndrome (NFIX gene variant) are encouraged to participate. English must be the primary language spoken at home.

The information obtained from this study will be presented at the upcoming Malan Syndrome Family Conference and prepared for publication.

If you are interested in participating or need additional information, please contact the research coordinator for this study, Katie Huba, at khuba@jcu.edu.

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