Enroll -HD: A Prospective Registry Study in a Global Huntington's Disease Cohort

Description

Enroll-HD is a longitudinal, observational, multinational study that integrates two former Huntington's disease (HD) registries-REGISTRY in Europe, and COHORT in North America and Australasia-while also expanding to include sites in Latin America. More than 30,000 participants have now enrolled into the study. With annual assessments and no end date, Enroll-HD has built a large and rich database of longitudinal clinical data and biospecimens that form the basis for studies developing tools and biomarkers for progression and prognosis, identifying clinically-relevant phenotypic characteristics, and establishing clearly defined endpoints for interventional studies. Periodic cuts of the database are now available to any interested researcher to use in their research - visit www.enroll-hd.org/for-researchers/access-data/ to learn more.

Conditions

Huntington's Disease

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Study Overview

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Study Details

Study overview

Enroll-HD is a longitudinal, observational, multinational study that integrates two former Huntington's disease (HD) registries-REGISTRY in Europe, and COHORT in North America and Australasia-while also expanding to include sites in Latin America. More than 30,000 participants have now enrolled into the study. With annual assessments and no end date, Enroll-HD has built a large and rich database of longitudinal clinical data and biospecimens that form the basis for studies developing tools and biomarkers for progression and prognosis, identifying clinically-relevant phenotypic characteristics, and establishing clearly defined endpoints for interventional studies. Periodic cuts of the database are now available to any interested researcher to use in their research - visit www.enroll-hd.org/for-researchers/access-data/ to learn more.

Enroll -HD: A Prospective Registry Study in a Global Huntington's Disease Cohort

Enroll -HD: A Prospective Registry Study in a Global Huntington's Disease Cohort

Condition
Huntington's Disease
Intervention / Treatment

-

Contacts and Locations

Birmingham

University of Alabama, Birmingham, Alabama, United States, 35294

Phoenix

St. Joseph's Hospital and Medical Center, Phoenix, Arizona, United States, 85013

Irvine

University of California - Irvine Medical Center, Irvine, California, United States, 92697

Loma Linda

Loma Linda Medical Center, Loma Linda, California, United States, 92354

Los Angeles

University of California - Los Angeles, Los Angeles, California, United States, 90095

Sacramento

University of California - Davis, Sacramento, California, United States, 95817

San Diego

University of California - San Diego, San Diego, California, United States, 92037

San Francisco

University of California - San Francisco, San Francisco, California, United States, 94158

Englewood

Cenexel Rocky Mountain Clinical Research, LLC, Englewood, Colorado, United States, 80113

Farmington

University of Connecticut, Farmington, Connecticut, United States, 06032

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

  • * Carriers: This group comprises the primary study population and consists of individuals who carry the HD gene expansion mutation.
  • * Controls: This group comprises the comparator study population and consists of individuals who do not carry the HD expansion mutation.
  • * Manifest/Motor-manifest HD: Carriers with clinical features that are regarded in the opinion of the investigator as diagnostic of HD.
  • * Pre-Manifest/-Motor-manifest HD: Carriers without clinical features regarded as diagnostic of HD.
  • * Genotype Unknown: This group includes a first or second degree relative (i.e., related by blood to a carrier) who has not undergone predictive testing for HD and therefore has an undetermined carrier status.
  • * Genotype Negative: This group includes a first or second degree relative (i.e., related by blood to a carrier) who has undergone predictive testing for HD and is known not to carry the HD expansion mutation.
  • * Family Control: Family members or individuals not related by blood to carriers (e.g., spouses, partners, caregivers).
  • * Community Controls: Individuals unrelated to HD carriers who did not grow up in a family affected by HD. Data collected from community controls will be used for generation of normative data for sub-studies.
  • * Individuals who do not meet inclusion criteria,
  • * Individuals with choreic movement disorders in the context of a negative test for the HD gene mutation.
  • * For Community Controls: those individuals with a major central nervous system disorder will be excluded (e.g. stroke, Parkinson's disease, multiple sclerosis, etc.).

Ages Eligible for Study

18 Years to

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

Yes

Collaborators and Investigators

CHDI Foundation, Inc.,

Bernhard G Landwehrmeyer, MD, PhD, PRINCIPAL_INVESTIGATOR, University of Ulm

Jamie Levey, STUDY_DIRECTOR, CHDI Foundation, Inc.

Study Record Dates

2062-01