Skip to content
Bored Studies
RecruitingAccepts healthy volunteers

Comprehensive HHT Outcomes Registry of the United States (CHORUS)

Cure HHT · with Augusta University, The Cleveland Clinic · NCT06259292

View Study & Apply (opens in a new tab)

Opens the official ClinicalTrials.gov record, with the study team’s contacts. Bored Studies doesn’t enroll anyone.

Key facts

Compensation
Not posted. Ask the study team before screening.
Who can join
Any age listed · All sexes
Healthy volunteers
Accepted
Study type
Observational
Target enrollment
10000
US sites recruiting
16
Study start
November 13, 2023
Record last updated
July 17, 2026

Status re-checked against ClinicalTrials.gov within the last 12 hours.

What the study is about

The Comprehensive HHT Outcomes Registry of the United States (CHORUS) is an observational registry of patients diagnosed with Hereditary Hemorrhagic Telangiectasia (HHT). The purpose of this study is to better understand HHT, the symptoms and complications it causes, and the impact the disease has on people's lives. The investigators will collect long-term information about the participant, allowing us to understand how the disease changes over time, and what factors can influence those changes. Ultimately, this should help improve treatments for the disease.

Another important goal of the study is to provide a way to contact people to participate in future clinical trials and other research. The registry will be a centralized resource for recruitment for clinical trials. People in the registry will not be obligated to join any of these additional studies, but if interested, can agree to be contacted if they may be eligible for a study.

Participants will

  • Be asked to provide permission to collect information from their medical records, including things like demographic information, diagnosis information, family history, test results, treatment information, symptoms, complications, lifestyle and other relevant medical information.
  • Be asked study-related questions by phone or at a clinic visit.
  • Be asked study-related questions every year after enrollment for up to 10 years or until the study ends. A member of the study team will communicate with participants by phone or at clinic visits to collect information regarding any changes to their health over the previous year/s including new test results, treatment information, symptoms, and complications from HHT.

Conditions: Hereditary Hemorrhagic Telangiectasia; Arteriovenous Malformations; Telangiectasia; Epistaxis; GastroIntestinal Bleeding; Cerebral Arteriovenous Malformations; Vascular Malformation

Eligibility criteria

Copied from the official record. The study team makes the final decision at screening.

Show full criteria

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.

Recruiting US locations

  • University of Alabama at Birmingham

    Birmingham, AL 35294

    Site contact: Josie Harris, BSN, RN · 205-996-9647 · jcrespo@uabmc.edu

  • University of California, Los Angeles

    Los Angeles, CA 90095

    Site contact: Niloofar (Lily) Sheshebor · 310-562-9752 · nsheshebor@mednet.ucla.edu

  • University of California, San Francisco

    San Francisco, CA 94107

    Site contact: Bridget Kilbride · 415-514-6221 · bridget.kilbride@ucsf.edu

  • University of Colorado, Denver

    Aurora, CO 80045

    Site contact: Johan Allingmon · 303-724-6052 · johan.allingmon@cuanschutz.edu

  • Yale University

    New Haven, CT 06520

    Site contact: Katharine Henderson · 203-737-1427 · katharine.henderson@yale.edu

  • Augusta University

    Augusta, GA 30912

    Site contact: Melissa James, RN · 706-721-5599 · mejames@augusta.edu

  • Massachusetts General Hospital

    Boston, MA 02114

    Site contact: Mamary Kone, MD, MPH · 617-724-0536 · mkone@mgh.harvard.edu

  • Mayo Clinic

    Rochester, MN 55905

    Site contact: Greg Schwichtenberg · 507-255-1245 · Schwichtenberg.Greg@mayo.edu

  • Washington University School of Medicine

    St Louis, MO 63110

    Site contact: Melissa Beasley, AA · 314-273-5922 · beasleym@wustl.edu

  • Columbia University

    New York, NY 10032

    Site contact: Kelsey Weddig, RN, BSN · 212-305-7470 · kw3149@cumc.columbia.edu

  • University of North Carolina, Chapel Hill

    Chapel Hill, NC 27599

    Site contact: Karen Smith, RN · 916-966-2790 · karens@med.unc.edu

  • The Cleveland Clinic

    Cleveland, OH 44106

    Site contact: JoAnne Baran, RN · 216-645-1372 · baranj2@ccf.org

  • Oregon Health and Science University

    Portland, OR 97239

    Site contact: Lori Russell, RN · 503-494-7226 · watsonlo@ohsu.edu

  • University of Pennsylvania

    Philadelphia, PA 19104

    Site contact: Isaac Elysee, MS · 215-614-0833 · isaac.elysee@pennmedicine.upenn.edu

  • University of Texas Southwestern

    Dallas, TX 75390

    Site contact: Sabrina Akhter Mim · 214-645-6092 · Sabrina.AkhterMim@UTSouthwestern.edu

  • University of Utah

    Salt Lake City, UT 84132

    Site contact: Kehaunani Tai · 801-581-8188 · nani.tai@hsc.utah.edu

Study contacts (from the official record)

  • Nolie E Krock, MSc · 410-357-9932 · nolie.krock@curehht.org
  • Cassi Friday, PhD · 410-357-9932 · cassi.friday@curehht.org
All healthy volunteers studies in Alabama →
Comprehensive HHT Outcomes Registry of the United States (CHORUS) (NCT06259292) | Bored Studies