Hereditary Hemorrhagic Telangiectasia (HHT)
What is Hereditary Hemorrhagic Telangiectasia (HHT)?
A community for those affected by HHT. Hereditary Hemorrhagic Telangiectasia (HHT) is a genetic disorder that causes malformed blood vessels and can affect multiple organs of the body. The disorder is also sometimes referred to as Osler-Weber-Rendu (OWR) after several doctors who studied HHT in the late 1800s.
A community for those affected by HHT. Hereditary Hemorrhagic Telangiectasia (HHT) is a genetic disorder that causes malformed blood vessels and can affect multiple organs of the body. The disorder is also sometimes referred to as Osler-Weber-Rendu (OWR) after several doctors who studied HHT in the late 1800s.
The overall incidence of HHT in North America is estimated at 1:10,000 [Marchuk et al 1998]; however, this is likely an underestimate [Guttmacher et al 2013].
| Name | Description |
|---|---|
| Seizures | Seizures |
| Headache | Headache |
| Anemia | Anemia is a deficiency of hemoglobin. |
| Seizure | Seizure |
| Telangiectasia | Telangiectasia is the dilation of capillaries. |
| shortness of breath or difficulty breathing | shortness of breath or difficulty breathing |
| Nose symptoms | Pain and stuffiness in the nose |
| Shortness of breath | Shortness of breath |
| Bleeding | Bleeding |
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Clinical Trials
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
- Complete the screening form.
- Review the informed consent.
- Answer the permission and data sharing questions.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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