Advancing Care for Hereditary Hemorrhagic Telangiectasia (HHT)
At Cincinnati Children’s HHT Center of Excellence, we combine nationally recognized clinical care with leading-edge research to improve the lives of patients with hereditary hemorrhagic telangiectasia (HHT) and related vascular disorders. We offer several opportunities for patients to participate in clinical research and clinical trials, helping advance our understanding of HHT while gaining access to emerging therapies.
Our team's involvement with the Brain Vascular Malformations Consortium (BVMC) registry and repository, a national collaboration funded through the Rare Diseases Clinical Research Network (RDCRN), helped establish foundational knowledge that continues to shape how HHT is diagnosed, monitored, and treated today.
To continue advancing the field, Cincinnati Children’s maintains an HHT Registry, open to individuals with:
- Possible or definite HHT
- Possible or definite CM-AVM
This registry allows our researchers and clinicians to better understand disease progression, outcomes, and treatment responses—directly informing improvements in patient care.
Our ongoing HHT research studies are an essential part of how we deliver the most advanced, evidence-based treatment possible.
