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.…

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FREE Genetic Testing for 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 rare disease 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 gene…

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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.

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NYMAC Genetic Counseling Survey

The University of Arkansas for Medical Sciences is offering an opportunity to participate in a research study aimed at assessing a gap in genetic counseling literature involving the Hispanic/Latinx population. **Eligible participants can be anyone who lives in the USA or its territories, aged 18-79, whose primary language is Spanish** Click here to be redirected…

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Recently Closed Studies

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:  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