RESEARCH STUDIES FOR MALAN SYNDROME
Study Title: Observational Study Evaluating Natural History, Clinical Progression, and Patient-Reported Outcomes in Malan Syndrome
Principal Investigator: Jennifer Kalish, MD, PhD
Research Institution: Children's Hospital of Philadelphia
Status: Enrolling
This study aims to characterize the natural history and clinical progression of Malan syndrome by reviewing the signs and symptoms of the syndrome, including symptom severity, and functional outcomes in patients with genetically confirmed Malan syndrome. Specifically, this study will observe the effects of clinician-prescribed medications on symptom mitigation as well as behavior, sleep, and communication ability.
Enroll here
If you need additional information, please contact overgrowthresearch@chop.edu
Study Title: Comprehensive Dental History Evaluation in Malan Syndrome
Principal Investigator: Benjamin Cocanougher, MD, PhD
Research Institution: Cincinnati Children's Hospital
Status: Enrolling until March 31, 2026
The purpose of this study is to better understand oral health, dental development, and craniofacial features in individuals with Malan syndrome.
What Participation Involves
If you agree to take part, your participation will include completing a one-time survey about the dental history for yourself or the individual you care for.
This survey will include questions about:
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Tooth development
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Dental or oral health concerns
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Dental care history
Who Can Participate
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Any individual with a diagnosis of Malan syndrome
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All ages welcome
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Parent/primary caregiver with English fluency
Risks, Benefits, Costs, Payment
There are no known risks associated with participating in this study. There are no direct benefits to you personally; however, your participation may help improve our understanding of and future dental care for individuals with Malan syndrome.
Participation is entirely voluntary, and you may withdraw at any time. There is no cost to participate and you will not receive payment for completing the survey.
Enroll and complete the survey here.
If you need additional information, please contact the research coordinator for this study, Kaitlynn Jenkins, at 513-636-2811 or kaitlynn.stowers@cchc.org
