Status:
ACTIVE_NOT_RECRUITING
Cerebral Hemorrhage Risk in Hereditary Hemorrhagic Telangiectasia
Lead Sponsor:
Unity Health Toronto
Collaborating Sponsors:
National Institute of Neurological Disorders and Stroke (NINDS)
Conditions:
Hereditary Hemorrhagic Telangiectasia
Eligibility:
All Genders
Brief Summary
This study is one of the three projects of an NIH Rare Disease Clinical Research Consortium. A "consortium" is a group of centres sharing information and resources to perform research. The consortium ...
Detailed Description
4\. Study Design and Methods In conjunction with the DMCC, we will construct a relational database and web-based data collection instrument; see Table 1 showing the sites that will contribute to this ...
Eligibility Criteria
Inclusion
- Inclusion criteria:
- Definite clinical HHT diagnosis (at least 3 Curacao criteria)or genetic diagnosis of HHT or
- Definite clinical HHT diagnosis (at least 3 Curacao criteria) or genetic diagnosis of HHT and Presence of Brain Arteriovenous Malformation
- Able to provide informed consent
- Curacao criteria:
- spontaneous recurrent nosebleeds;
- mucocutaneous telangiectasia at characteristic sites (lips, oral cavity or the nose);
- visceral involvement such as pulmonary, hepatic or CNS BAVM; and (d) an affected first degree relative by same criteria.
- Willingness
- Willingness to participate in the study and ability to give informed consent
- Exclusion Criteria:
- Patients not complying with Inclusion criteria
Exclusion
Key Trial Info
Start Date :
April 8 2010
Trial Type :
OBSERVATIONAL
Allocation :
ACTUAL
End Date :
June 30 2025
Estimated Enrollment :
2272 Patients enrolled
Trial Details
Trial ID
NCT01158807
Start Date
April 8 2010
End Date
June 30 2025
Last Update
April 8 2025
Active Locations (19)
Enter a location and click search to find clinical trials sorted by distance.
1
Barrow Neurological Institute
Phoenix, Arizona, United States, 85013
2
University of Arkansas for Medical Sciences
Little Rock, Arkansas, United States, 72205
3
David Geffen School of Medicine at University of California, Los Angeles
Los Angeles, California, United States, 90095
4
University of California, San Francisco
San Francisco, California, United States, 94110