RecruitingNCT06508164

International CRDS Registry

International Calcium Release Deficiency Syndrome Registry


Sponsor

Population Health Research Institute

Enrollment

500 participants

Start Date

Nov 21, 2024

Study Type

OBSERVATIONAL

Conditions

Summary

Calcium Release Deficiency Syndrome (CRDS) is a newly discovered genetic arrhythmia syndrome that confers a risk of life-threatening arrhythmias secondary to RYR2 loss-of-function. The International CRDS registry has been designed to facilitate large-scale evaluation of CRDS, including its phenotypic spectrum, approaches to risk stratification, and optimal treatment strategies.


Eligibility

Inclusion Criteria11

  • CRDS Cohort
  • Inclusion Criterion:
  • \- Presence of a rare* RYR2 variant that is characterized to be loss-of-function based on in vitro testing#
  • RYR2 Truncating and Large CNV Cohort
  • Inclusion Criterion:
  • \- Presence of a rare* RYR2 truncating variant and/or large copy number variant involving the RYR2 gene.
  • Carriers of a Non-Functional RYR2 variant
  • Inclusion Criterion:
  • \- Presence of a rare* RYR2 variant that is characterized to be neither loss- nor gain-of-function based on in vitro testing#
  • *rare defined as gnomAD prevalence < 0.1%
  • #RYR2 in vitro functional testing will be performed in the laboratory of Dr. Wayne Chen (University of Calgary)

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Locations(16)

University of California

San Francisco, California, United States

Mayo Clinic

Rochester, Minnesota, United States

Duke University

Durham, North Carolina, United States

Garvan Institute of Medical Research

Darlinghurst, New South Wales, Australia

Antwerp University Hospital

Edegem, Antwerp, Belgium

Universitair Ziekenhuis Brussel

Brussels, Belgium

University of Calgary

Calgary, Alberta, Canada

Children's & Women's Health Centre of British Columbia

Vancouver, British Columbia, Canada

Hamilton General Hospital

Hamilton, Ontario, Canada

London Health Sciences Centre - University Hospital

London, Ontario, Canada

Montréal Heart Institute

Montreal, Quebec, Canada

Institut Universitaire de Cardiologie et de Pneumologie de Québec-Université Laval

Québec, Quebec, Canada

Aarhus University Hospital

Aarhus, Denmark

CHU de Bordeaux

Bordeaux, New Aquitaine, France

Shaare Zedek Medical Center

Jerusalem, Israel

City St George's, University of London

London, United Kingdom

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NCT06508164