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New global registry aims to unlock secrets of rare heart rhythm disorder

NCT ID NCT06508164

Knowledge-focused Sponsor: Population Health Research Institute Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Sep 01, 2026 · Updated 5 times

Summary

This study is creating a worldwide registry for people with Calcium Release Deficiency Syndrome (CRDS), a rare genetic heart condition that can cause dangerous heart rhythms. Researchers will collect health information from 500 participants to better understand the condition's symptoms, risks, and best treatments. The goal is to improve care for people with CRDS by learning from real-world data.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this registry could help doctors identify who is at highest risk of dangerous heart rhythms and guide better treatment decisions for people with CRDS.
What could go wrong
This is an observational registry, not a treatment trial, so it won't directly test a new therapy. The condition is newly discovered, so knowledge is still very limited.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 500 people

The number the study aims to enrol. It can still change while the study runs.

Started

Nov 2024

Expected to finish

Dec 2050

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

The registry will enrol 3 separate cohorts. The primary cohort consists of CRDS cases. A CRDS case is defined as an individual that possesses a rare RYR2 variant proven to be loss-of-function on in vitro analysis. A second cohort consists of individuals that possess a rare RYR2 truncating variant or large copy number variant. The third cohort involves individuals suspected of having CRDS, however in vitro analysis revealed that their rare RYR2 variant did not impact function.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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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As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Calcium release deficiency syndrome

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    21 sites in 8 countries. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Aarhus University Hospital

    RECRUITING

    Aarhus, DK-8200 N, Denmark

  • Antwerp University Hospital

    RECRUITING

    Edegem, Antwerp, 2650, Belgium

  • CHU de Bordeaux

    RECRUITING

    Bordeaux, New Aquitaine, 33404, France

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

    RECRUITING

    Vancouver, British Columbia, V6H 3N1, Canada

  • City St George's, University of London

    RECRUITING

    London, EC1V 0HB, United Kingdom

  • Duke University

    RECRUITING

    Durham, North Carolina, 27710, United States

  • Garvan Institute of Medical Research

    RECRUITING

    Darlinghurst, New South Wales, 2010, Australia

  • Hamilton General Hospital

    RECRUITING

    Hamilton, Ontario, L8L 2X2, Canada

  • Inova Health Care Services

    RECRUITING

    Fairfax, Virginia, 22031, United States

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

    RECRUITING

    Québec, Quebec, Canada

  • London Health Sciences Centre - University Hospital

    RECRUITING

    London, Ontario, N6A 5A5, Canada

  • Mayo Clinic

    RECRUITING

    Rochester, Minnesota, 55905, United States

  • Montréal Heart Institute

    RECRUITING

    Montreal, Quebec, H1T 1C8, Canada

  • Ottawa Heart Institute

    RECRUITING

    Ottawa, Ontario, K1Y 4W7, Canada

  • Oxford University Hospitals

    RECRUITING

    Oxford, Oxfordshire, 0X3 9DU, United Kingdom

  • Rigshospitalet

    RECRUITING

    Copenhagen, The Capital Region of Denmark, 2100, Denmark

  • Shaare Zedek Medical Center

    RECRUITING

    Jerusalem, 9103102, Israel

  • The University of British Columbia

    RECRUITING

    Vancouver, British Columbia, V6T 1Z3, Canada

  • Universitair Ziekenhuis Brussel

    RECRUITING

    Brussels, 1090, Belgium

  • University of Calgary

    RECRUITING

    Calgary, Alberta, T2N 1N4, Canada

  • University of California

    RECRUITING

    San Francisco, California, 94143, United States