Actively Recruiting
Global Patient Registry Study to Collect Natural History Data for Charcot-Marie-Tooth and Other Inherited Neuropathies
Led by Hereditary Neuropathy Foundation · Updated on 2024-10-01
10000
Participants Needed
1
Research Sites
N/A
Total Duration
AI-Summary
What this Trial Is About
Researchers are gathering detailed information about Charcot-Marie-Tooth disease CMT and other inherited neuropathies through a Natural History Study. This study collects patient-reported data, genetic reports, electronic health records, and clinical notes to better understand the diseases impact, the diagnosis process, and how common it is. The goal is to support scientists in their efforts to find a cure for these conditions. Participants will be asked to complete a Natural History Survey that helps record their experience with CMT. There are no specific treatment groups or interventions in this observational study. Instead, the study focuses on collecting information from affected individuals of all ages, including children, adolescents, and adults, with confirmed or suspected diagnoses. Throughout the study, researchers will review data related to the type of CMT, symptoms experienced, how symptoms affect daily activities, and any related health conditions over a period of 156 weeks. Participation involves sharing survey responses and allowing access to medical records, supporting long-term data collection to improve understanding of inherited neuropathies.
CONDITIONS
Brief Title
Natural History Study for Charcot Marie Tooth Disease
Research Team
A
Allison Moore
J
Joy Aldrich
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