Cure HHT
Data Transfer and Use Agreement for CHORUS
Important outcomes registry that will help accelerate research toward a cure for HHT
Posted April 1, 2024
Work & Deliverables
We are looking for someone to review our Data Transfer and Use Agreement for CHORUS: Comprehensive HHT (Hereditary Hemorrhagic Telangiectasia) Outcomes Registry of the United States. This is currently being used for enrollment sites and we would like to adapt for our partnership with scientists and researchers who request data and publications from the registry.
Cure HHT
Cure HHT is an international advocacy organization supporting and providing educational services patients and families with the rare blood vessel disease, Hereditary Hemorrhagic Telangiectasis (HHT). We were formed in 1991 and have evolved in supporting and funding research, collaborations, and have 32 multi-diciplinary Centers of Excellence in North America and 21 globally. HHT is the 2nd most common inherited bleeding disorder with no approved FDA therapies. We have increased capacity through the Rare As One Grant and opened a therapeutic arm of our organization. We participated in 3 clinical trials-1 in which we have taken forward ourselves and received $6.2M in funding for this Phase II III clinical trial from the Department of Defense and the FDA. We will be launching our patient reported registry in April 2023 to obtain important deidentified patient information on their disease. We received a 3 year grant from the Health Resources and Services administration to support 15 Centers of Excellence in the U.S. With focus on increasing access to coordinated care and development of a continuing medical education program, we are creating more awareness leading to increased diagnosis and treatment. A third element of the program is a research registry recruiting patients seen at HHt Centers of Excellence. We have received IRB approvals and are launching a biorepository in which we will make tissue samples available to researchers .
Cure HHT
Cure HHT is an international advocacy organization supporting and providing educational services patients and families with the rare blood vessel disease, Hereditary Hemorrhagic Telangiectasis (HHT). We were formed in 1991 and have evolved in supporting and funding research, collaborations, and have 32 multi-diciplinary Centers of Excellence in North America and 21 globally. HHT is the 2nd most common inherited bleeding disorder with no approved FDA therapies. We have increased capacity through the Rare As One Grant and opened a therapeutic arm of our organization. We participated in 3 clinical trials-1 in which we have taken forward ourselves and received $6.2M in funding for this Phase II III clinical trial from the Department of Defense and the FDA. We will be launching our patient reported registry in April 2023 to obtain important deidentified patient information on their disease. We received a 3 year grant from the Health Resources and Services administration to support 15 Centers of Excellence in the U.S. With focus on increasing access to coordinated care and development of a continuing medical education program, we are creating more awareness leading to increased diagnosis and treatment. A third element of the program is a research registry recruiting patients seen at HHt Centers of Excellence. We have received IRB approvals and are launching a biorepository in which we will make tissue samples available to researchers .