Skip to content

Surveys/ Studies

Help advance HHT Research!

Rare Disease Surveys & Studies

Various HHT related research studies take place throughout the year. You or a family member may be interested in furthering the advancement of HHT research by participating in one or all of the research surveys or studies listed below.

Please note that the listed surveys and studies are not necessarily conducted or overseen by Cure HHT, but are beneficial to HHT or rare disease research.

Current Surveys and Studies

Suffer from brain AVMs? You can help further HHT research today

Cure HHT, along with HHT Centers of Excellence across North America, are now actively recruiting HHT patients worldwide to participate in the NIH funded study, entitled “Cerebral Hemorrhage Risk in Hereditary Hemorrhagic Telangiectasia (HHT)”. The goal of this research is to determine what genetic and clinical factors signal high risk for hemorrhage from brain AVMs.…

Learn More >>

Become a Tissue Donor

Duke University, through a separate BVMC project, is collecting vascular malformations (VMs) associated with HHT to search for somatic mutations, possibly occurring in different genes than the ones already identified. All HHT patients undergoing surgery to remove an AVM from any organ (i.e., liver, lung, brain, skin, etc.), are encouraged to consider donating  tissue. You do not need to have a brain AVM to participate in this study project.

Learn More >>

No-Cost Genetic Testing for HHT & Other Rare Diseases

The Rare Genomes Project is a patient-driven research project through the Broad Institute that performs full genome sequencing on families with suspected singe gene disorders who do not have a genetic diagnosis. The goal of their project is two-fold: (1) provide access to testing for families that are genetically undiagnosed and (2) discover previously un-identified…

Learn More >>

NARRATE Study: Rare Disease Survey

The Children’s Hospital of Philadelphia is conducting a research study aimed at identifying needs among communities affected by rare disease with hopes of bridging existing communication gaps between rare disease patients, families, and physicians. Adult parents and patients living with rare diseases are invited to participate in an online survey.

Learn More >>

Recently Closed Studies

Developing Future Treatments for Nosebleeds

Johns Hopkins Hospital HHT Center of Excellence

Validating a New Nosebleed Management Tool

Johns Hopkins Hospital HHT Center of Excellence

Nosebleeds: Quality of Life Survey/ Developing Future Treatments

Johns Hopkins Hospital HHT Center of Excellence

NYMAC Genetic Counseling Survey

The University of Arkansas for Medical Sciences

Hopkins Quality of Life Patient Survey

HHT Center of Excellence at Johns Hopkins School of Medicine

Assessing the care and treatment HHT patients receive for cutaneous telangiectasia

Augusta University HHT Center of Excellence

Date closed: October 2022

Date closed:  2022

Date closed:  7/2022

Date closed:  5/9/2022

Date closed:  3/23/2022

Abnormal Uterine Bleeding in Women with HHT

HHT Center of Excellence at the University of North Carolina

Date closed:  3/15/2022

Scroll To Top