Modifiers of Disease Severity in Cerebral Cavernous Malformations
Public ClinicalTrials.gov record NCT01764529. Field values are reproduced from the official study page; the official ClinicalTrials.gov record remains the source of truth for eligibility, enrollment, and contact information.
Data is sourced from official ClinicalTrials.gov public API records. Always review the official ClinicalTrials.gov record for the latest information.
Official title
Modifiers of Disease Severity and Progression in Cerebral Cavernous Malformations
Brief summary
Reproduced verbatim from the official ClinicalTrials.gov record. Not medical advice.
Cerebral cavernous malformations (CCMs) are clusters of abnormal blood vessels in the brain and spine. CCMs can bleed and cause strokes, seizures, and headaches. CCMs are often caused by an inherited gene mutation (alteration) in one of three CCM genes (CCM1, CCM2, or CCM3). There is a wide range of disease severity even among family members with this disease, though the natural history has not been clearly described for this particular population. This study will continue to enroll and follow participants with familial CCM to identify factors that influence CCM disease severity and progression, focusing on barriers to clinical trial preparedness. Our long-term goal is to identify measurable outcomes and robust biomarkers that will help select high-risk patients and help monitor drug response in future clinical trials. The specific goals of this study are to: * Identify factors that influence lesion progression to symptomatic hemorrhage and other outcomes, including quality of life; * Investigate the role of the gut microbiome and lesion burden in CCM disease, and * Identify blood biomarkers predictive of CCM disease severity and progression for clinical trials.
Study identification
- NCT ID
- NCT01764529
- Recruitment status
- Completed
- Study type
- Observational
- Phase
- Not listed
- Enrollment
- 789 participants
Conditions and interventions
Conditions
Interventions
Not listed
Eligibility (public fields only)
- Age range
- Not listed
- Sex
- All
- Healthy volunteers
- Healthy volunteers not accepted
This page does not interpret eligibility. Detailed inclusion and exclusion criteria are on the official ClinicalTrials.gov record.
Study timeline
- Start date
- Apr 26, 2010
- Primary completion
- Mar 30, 2025
- Completion
- Jun 29, 2025
- Last update posted
- Jul 26, 2026
2010 – 2025
United States locations
- U.S. sites
- 7
- U.S. states
- 7
- U.S. cities
- 7
| Facility | City | State | ZIP | Site status |
|---|---|---|---|---|
| Barrow Neurological Institute | Phoenix | Arizona | 85013 | — |
| University of California, San Francisco | San Francisco | California | 94143 | — |
| University of Chicago, Medicine and Biological Sciences | Chicago | Illinois | 60637 | — |
| Boston Children's Hospital | Boston | Massachusetts | 02115 | — |
| University of New Mexico Health Sciences Center | Albuquerque | New Mexico | 87131 | — |
| Cincinnati Children's Hospital, Division of Pediatric Neurosurgery, Cerebrovascular Program | Cincinnati | Ohio | 45229 | — |
| Alliance to Cure Cavernous Malformation | Charlottesville | Virginia | 22901 | — |
Site contact phone numbers, emails, and investigator names are intentionally not displayed here. Open the official ClinicalTrials.gov record for site contact information.
About this trial record page
- What this page shows
- Public field values for ClinicalTrials.gov record NCT01764529, including study identification, conditions, interventions, eligibility (age, sex, healthy volunteer), timeline, and U.S. site list.
- What this page does not do
- No medical advice, eligibility judgments, treatment recommendations, study quality scoring, or AI-generated medical summaries. No site contact phone numbers, emails, or investigator names.
- Where the data comes from
- Sourced from the official ClinicalTrials.gov public API. The official record is the source of truth.
- Last refresh
- Last update posted Jul 26, 2026 · Synced Sep 6, 2026
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Open the official record
The complete protocol, eligibility criteria, and contact information for NCT01764529 live on ClinicalTrials.gov.