Comprehensive Hereditary Hemorrhagic Telangiectasia Outcomes Registry of the United States

Overview

About this study

The purpose of this study is to develop a data collection registry with a large cohort of Hereditary Hemorrhagic Telangiectasia (HHT) patients with a large cohort of HHT patients that will be followed over time.

Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.

Inclusion Criteria:

Diagnosed with HHT based on the Curacao diagnostic criteria or genetic testing.
Able to provide informed consent or informed consent via a parent or legally authorized representative due to their age or medical condition.

Exclusion Criteria:

Unable to provide informed consent or informed consent via a parent or legally authorized representative.

Note: Other protocol defined Inclusion/Exclusion Criteria may apply.

Eligibility last updated 9/26/23. Questions regarding updates should be directed to the study team contact.

Participating Mayo Clinic locations

Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.

Mayo Clinic Location	Status	Contact
Rochester, Minn. Mayo Clinic principal investigator Vivek Iyer, M.D., M.P.H.	Open for enrollment	Contact information: Department of Medicine (DOM) Research Hub (507) 266-1944 DOMRESEARCHHUB@mayo.edu

Mayo Clinic Location

Status

Contact

Rochester, Minn.

Mayo Clinic principal investigator

Vivek Iyer, M.D., M.P.H.

Open for enrollment

Contact information:

Department of Medicine (DOM) Research Hub

(507) 266-1944

DOMRESEARCHHUB@mayo.edu

More information

Publications

Publications are currently not available

Clinical Trials