We need 400 Alliance to Cure Cavernous Malformation members with CCM to assist in the next phase of developing the CCM Health-Index by completing a 20-minute survey three times: now, in 6 months, and then again, in 12 months. The CCM Health-Index is the first CCM-specific tool to measure the impact of the illness on patients. Once completed, it may become one way that we measure whether a treatment is having an effect. Your participation is critical.
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Longitudinal Evaluation of the Cerebral Cavernous Malformation Health-Index (CCM-HI) for Use in Future CCM Clinical Trials
What: The purpose of this study is to assess the ability of the Cerebral Cavernous Malformation Health-Index (CCM-HI) survey to measure patient-relevant changes in disease burden over time. This study is being conducted by Dr. Heatwole from the University of Rochester Department of Neurology. This study will take place over the course of one year. If you decide to participate, you will complete 3-4 surveys at baseline, 6 months, and 12 months. You will be asked to complete demographic information about yourself as well as answer questions about your symptomatic burden of CCM, your overall changes in health over time, and your preferences using the surveys administered throughout this study.
Who can participate: Individuals with CCM, ages 18 and older.
How to participate: Interested participants may use this link: https://redcap.link/ccm.health.index. The link will direct you to a web page with more information about this study. Any questions or comments can be directed to the study coordinator, Jamison Seabury at jamison.seabury@chet.rochester.edu/ 585.867.1461
