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

StatusRecruiting
PhaseNot specified
Started2012-07
View on ClinicalTrials.gov ↗

Amendment history

The 50 most recent of 72 record versions are listed below. See every version on ClinicalTrials.gov ↗

2024-02-26
Study Status, Outcome Measures v71
Primary endpoints10 to 4 entries
Behavioral Cognitive Assessments: 1 CognitiveSymbol AssessmentsDigit 2 CognitiveModality AssessmentsTest; 3 CognitiveStroop AssessmentsColor 4Naming; Stroop Word Reading; Categorical Verbal Fluency Functional Assessments: 1 UHDRS '99 Total Functional AssessmentsCapacity, 2 UHDRS '99 Functional AssessmentsAssessment 3Scale, UHDRS '99 Independence Scale Motor Assessments: 1Unified Huntington's Disease Rating Scale (UHDRS) 99 Motor, UHDRS '99 Diagnostic Confidence Level MotorProblem AssessmentsBehaviors 2Assessment-Short (PBA-s)
2024-02-09
Study Status, Study Description, Study Design, Outcome Measures, Contacts/Locations v70
Enrollment target20000→35000
Study sites181→183
Study description+10 characters
[...] nical research and participation in clinical research. With 158more than 150 active clinical sites in 1923 countries, Enroll-HD is now the largest HD database availab [...]
2023-11-17
Study Status, Contacts/Locations v69
Study sitescontacts updated at 4 of 181 sites
2023-09-01
Study Status, Contacts/Locations v68
Study sitescontacts updated at 1 of 181 sites
2023-08-24
Study Status, Contacts/Locations v67
Study sites180→181
Show 45 earlier versions
2023-07-07
Study Status, Contacts/Locations v66
Study sitescontacts updated at 2 of 180 sites
2023-06-23
Study Status, Contacts/Locations v65
Study sitescontacts updated at 1 of 180 sites
2023-05-24
Study Status, Contacts/Locations v64
Study sitescontacts updated at 2 of 180 sites
2023-05-12
Study Status, Contacts/Locations v63
Study sitescontacts updated at 1 of 180 sites
2023-05-08
Study Status, Contacts/Locations v62
Study sitescontacts updated at 2 of 180 sites
2023-03-10
Study Status, Contacts/Locations v61
Study sitescontacts updated at 1 of 180 sites
2023-03-03
Study Status, Contacts/Locations v60
Study sites179→180
2023-01-19
Study Status, Contacts/Locations v59
Study sites178→179
2022-07-06
Study Status, Contacts/Locations v58
Study sitescontacts updated at 5 of 178 sites
2022-03-29
Study Status, Contacts/Locations v57
Study sites178 entries, revised
Cenexel Rocky Mountain MovementClinical DisorderResearch, CenterLLC
2022-03-28
Study Status, Contacts/Locations v56
Study sitescontacts updated at 9 of 178 sites
2021-11-03
Study Status, Contacts/Locations v55
Study sites177→178
2021-05-11
Study Status, Contacts/Locations v54
Study sitescontacts updated at 4 of 177 sites
2021-02-24
Study Status, Contacts/Locations v53
Study sitescontacts updated at 1 of 177 sites
2021-01-14
Study Status, Contacts/Locations v52
Study sites177 entries, revised
University Hospital Lueven/ UZ Leuven Hôpital Pellegrin Hôpital Roger SalengroBruxelles - CHRUErasme Bordeaux - Huntington Disease competencies center Lille-Amiens - Huntington Disease Constituent site Krakow - Krakowska Akademia Neurologii Hospital de LilleSanta Maria / Instituto de Medicina Molecular MedizinischeComplejo HochschuleHospitalario Hannover Tâniade Silva Hospital Virgen del CaminoNavarra
2020-06-12
Study Status, Contacts/Locations v51
Study sitescontacts updated at 1 of 177 sites
2020-06-08
Study Status, Contacts/Locations v50
Study sitescontacts updated at 1 of 177 sites
2020-05-21
Study Status, Contacts/Locations v49
Study sites175→177
2020-04-23
Study Status, Contacts/Locations v48
Study sitescontacts updated at 2 of 175 sites
2020-04-20
Study Status, Contacts/Locations v47
Study sitesdetails revised at 2 of 175 sites
2020-02-25
Study Status, Contacts/Locations v46
Study sitescontacts updated at 2 of 175 sites
2020-01-28
Study Status, Contacts/Locations v45
Study sitescontacts updated at 2 of 175 sites
2019-12-10
Study Status, Contacts/Locations v44
Study sites175 entries, revised
SiteTânia Hospital de Santa Maria/ Instituto de Medicina MolecularSilva
2019-09-13
Study Status, Study Description, Contacts/Locations v43
Study sites173→175
Study description+7 characters
[...] nical research and participation in clinical research. With 173158 active clinical sites in 19 countries, Enroll-HD is now the larges [...]
2019-08-14
Study Status, Contacts/Locations v42
Study sitescontacts updated at 5 of 173 sites
2019-07-22
Study Status, Contacts/Locations v41
Study sitescontacts updated at 1 of 173 sites
2019-07-15
Study Status, Contacts/Locations v40
Study sitescontacts updated at 1 of 173 sites
2019-07-01
Study Status, Contacts/Locations v39
Study sitescontacts updated at 3 of 173 sites
2019-06-14
Study Status, Contacts/Locations v38
Study sites173 entries, revised
MinneapolisHennepin County Medical Research FoundationCenter
2019-05-30
Study Status, Contacts/Locations v37
Study sitescontacts updated at 1 of 173 sites
2019-05-13
Study Status, Contacts/Locations v36
Study sitesdetails revised at 1 of 173 sites
2019-04-11
Study Status, Contacts/Locations v35
Re-verified, no change to tracked fields
2019-04-05
Study Status, Study Description, Study Design, Eligibility, Contacts/Locations v34
Enrollment target15000→20000
Study sites172→173
Eligibility criteria+3 characters
[...] known: 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 therefo [...] ative: 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 no [...] as part of medical care, and will be updated at every visit; and 2) Research Genotyping Status: this will be based on ge [...] ous system disorder will be excluded (e.g. stroke, Parkinson's disease, Multiplemultiple Sclerosissclerosis, etc.). Participants under 18 may be eligible to pa [...]
Study description+95 characters
[...] nical research and participation in clinical research. With over173 200clinical sites in roughly 3019 countries, Enroll-HD willis benow the largest HD database available and is accessible to any interested researcher - visit www.enroll-hd.org/for-researchers/access-data/ HDto researcherslearn more.
2019-04-01
Study Status, Contacts/Locations v33
Study sitescontacts updated at 2 of 172 sites
2019-03-18
Study Status, Contacts/Locations v32
Study sitescontacts updated at 2 of 172 sites
2019-03-14
Study Status, Contacts/Locations v31
Study sitescontacts updated at 3 of 172 sites
2019-02-11
Study Status, Contacts/Locations v30
Study sites170→172
2019-01-29
Study Status, Contacts/Locations v29
Study sites168→170
2019-01-28
Study Status, Contacts/Locations v28
Study sites170→168
2019-01-14
Study Status, Contacts/Locations v27
Study sites170 entries, revised
Vanderbilt University Medical Center University of Alberta (Glenrose)
2019-01-07
Study Status, Contacts/Locations v26
Study sites162→170
2018-11-05
Study Status, Contacts/Locations v25
Study sitescontacts updated at 1 of 162 sites
2018-10-23
Study Status, Contacts/Locations v24
Study sites161→162
2018-09-27
Study Status, Contacts/Locations v23
Study sites159→161
2018-09-25
Study Status, Contacts/Locations v22
Study sitescontacts updated at 2 of 159 sites
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.
Trial Details
NCT Number NCT01574053
Lead Sponsor CHDI Foundation, Inc.
Conditions Huntington's Disease
Enrollment 35,000 participants
Start Date 2012-07
Primary Completion 2062-01 (estimated)
Study Completion 2062-01 (estimated)
Updated on ClinicalTrials.gov 2024-02-28