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Multicenter study to learn more about brain avms and bleeding in people with Hereditary Hemorrhagic Telangiectasia (HHT)

The purpose of this study is to learn more about brain AVMs (BAVMs) and bleeding in HHT. We plan to study risk factors for rupture of BAVMs and also for other bleeding and features of HHT disease, including primarily genetics and imaging characteristics of the BAVMs. We hope that knowledge about risk factors will help improve the care and management of HHT patients.

Age & Gender

  • 0 years ~ 99 years
  • Male, Female, Gender Inclusive

Location

United States (Nationwide)

What will be asked of you

We will collect and save information from your medical record, including things like your diagnosis, age, sex, race, symptoms, HHT genetic results, organ involvement, and your general health. We will review and save images, including X-rays, CTs, angiograms, and MRIs. We will ask you study-related questions in clinic or have you fill out a questionnaire about your demographics, past and current medical history, and behavioral history (e.g., recreational drug use, smoking, etc.). We will also have you fill out a quality of life survey. We will ask you questions about your family history so we can draw a family tree. A family tree is a picture that shows how family members are related. We will ask you their names, dates of birth, relationship to you, and about their health. This will take 30-45 minutes. If there is any missing information, we would like to be able to call you. Every 1 to 2 years after enrollment, for up to 10 years or until the study ends, you will be contacted to update information regarding any treatment and complications of HHT. This call will take about 15 minutes. In addition to your collecting your health information, you may also choose to agree to let researchers collect and store your specimens for research, we will collect a sample of blood, saliva, and/or tissue from you. The specimens will be labeled with a study ID number only and will not have any personal identifiers on them.

Total length of participation:
Up to 10 years

Looking for Specific Volunteers

Able to participate:

  • you have been diagnosed with Hereditary Hemorrhagic Telangiectasia
  • you have been diagnosed with HHT and have a brain vascular malformation
  • you have been diagnosed with HHT and you do not have a brain vascular malformation

Not eligible if:

  • you have not been diagnosed with Hereditary Hemorrhagic Telangiectasia

Contact the Team

Visit Location

100% Remote (online, phone, text)

Additional Study Information

Principal Investigator

Raj Kasthuri
Medicine-Hematology

Study Type

Clinical or Medical
Observational

Study Topics

Brain, Head, Nervous System
Rare Diseases

IRB Number

20-0653

ClinicalTrials.gov

NCT01158807

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