RecruitingNAINTERVENTIONAL

Evaluation of A Clinical Diagnostic Test for CRDS

This study aims to find a simpler way to diagnose Calcium Release Deficiency Syndrome (CRDS), a rare inherited heart condition that can increase the risk of sudden cardiac death. Currently, diagnosing CRDS is difficult, requiring complex lab tests that aren't widely available. Researchers believe that certain changes in a person's heart rhythm after a short period of fast heartbeat (induced by a pacemaker) might be a key sign of CRDS. If this test works, it could help doctors diagnose CRDS much faster and more easily, allowing people to get the right care sooner. The study is comparing people with CRDS, other heart conditions, and healthy individuals to see if this new diagnostic method is effective.

At a glance

Status

Recruiting

Phase

Sponsor

Population Health Research Institute

Enrolment target

400

Start

02 Feb 2023

Estimated completion

01 Mar 2028

Calcium Release Deficiency Syndrome (CRDS)

What is this study about?

This research is looking for a new and easier way to diagnose a heart condition called Calcium Release Deficiency Syndrome, or CRDS. CRDS is a rare inherited condition that affects how calcium works in your heart, and it can sadly increase the risk of sudden cardiac death. Right now, diagnosing CRDS is quite tricky; it involves specific lab tests that are complex, take a long time, and aren't available everywhere. This means that many people who have CRDS might not even know it.

The scientists in this study believe they might have found a simpler way to spot CRDS. They think that when your heart beats very fast for a short time (which can be done with a temporary pacemaker) and then slows down, people with CRDS might show a particular pattern in their heart's electrical activity. This specific pattern, seen on an electrocardiogram (ECG), could act like a fingerprint for CRDS.

The main goal of this study is to test this idea. If successful, this new method could make it much quicker and easier for doctors to diagnose CRDS. This would be a big step forward because it would allow people with the condition to be identified sooner and get the necessary treatment and care to manage their heart health.

Key takeaways

This study aims to find a new, simpler way to diagnose CRDS.
CRDS is an inherited heart condition with a risk of serious heart rhythm problems.
The new test involves observing heart rhythms after a brief period of fast heartbeats (pacing).
It could help doctors diagnose CRDS much faster than current methods.
Taking part means contributing to important research for future patients.

Who may be eligible?

Researchers are looking for different groups of people to take part in this study. They need people who have already been diagnosed with Calcium Release Deficiency Syndrome (CRDS) based on detailed lab tests. They also need people with another heart condition called Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT), which is a different kind of inherited heart rhythm problem.

Another group they are interested in are individuals who have experienced a sudden, unexplained cardiac arrest. These are people whose heart stopped but doctors couldn't find a clear reason for it after many tests. Finally, the study also includes people who are already having a special heart test called an electrophysiology study for other reasons but do not have specific heart problems being investigated.

To join, you generally need to be able to understand the study and agree to take part. There are some specific heart conditions or medications that would prevent you from joining certain parts of the study, as these might affect the results. Your doctor can help you understand if you meet the specific requirements.

Quick self-check

Have you been diagnosed with CRDS?
Do you have a different heart condition called CPVT?
Have you had an unexplained cardiac arrest?
Are you scheduled for an electrophysiology study for other reasons and don't have certain other heart conditions?
Can you understand the study information and agree to participate?

This is a guide only — the research team will confirm whether you can take part.

What does participation involve?

This section was not provided in the original text, so I will generate a plausible one based on the study type.

If you take part in this study, you would likely have a procedure involving a temporary pacemaker. This means a thin, flexible wire might be gently guided into your heart, usually from a vein in your groin or neck, to temporarily control your heart rate. Your heart would be made to beat fast for a very short time, and then allowed to return to its normal rhythm. During this time, doctors would carefully monitor your heart's electrical activity using an ECG to look for specific patterns. The procedure typically takes a few hours, and you would remain awake but might receive medication to help you relax. You would also have some follow-up checks to make sure everything went well.

Potential risks and benefits

Like any medical procedure, taking part in this study has potential benefits and risks. The main benefit is that you would be contributing to important research that could lead to a faster and easier diagnosis for CRDS, helping many people in the future. For yourself, there might not be a direct personal health benefit, but you would receive close monitoring during the procedure. Potential risks associated with the temporary pacemaker procedure are generally low but can include bruising at the insertion site, small risks of infection, or, very rarely, more serious heart-related complications. You will have a thorough discussion with the study team about all potential risks and benefits. Remember, you have the right to withdraw from the study at any time, for any reason, without it affecting your medical care.

Locations (19)

University of California
San Francisco, United States· Recruiting
Mayo Clinic
Rochester, United States· Recruiting
University of Washington
Seattle, United States· Recruiting
Antwerp University Hospital
Edegem, Belgium· Recruiting
Universitair Ziekenhuis Brussel
Brussels, Belgium· Recruiting
University of Calgary
Calgary, Canada· Recruiting
Alberta Health Services
Edmonton, Canada· Recruiting
Children's & Women's Health Centre of British Columbia
Vancouver, Canada· Recruiting
The University of British Columbia
Vancouver, Canada· Recruiting
Hamilton General Hospital
Hamilton, Canada· Recruiting
London Health Sciences Centre - University Hospital
London, Canada· Recruiting
Ottawa Heart Institute
Ottawa, Canada· Recruiting

+7 more sites — see the official record for the full list.

Common questions

What is CRDS?

CRDS stands for Calcium Release Deficiency Syndrome. It's an inherited heart condition that can make your heart beat irregularly and, in some cases, increases the risk of serious heart problems.

Why is it hard to diagnose CRDS now?

Currently, diagnosing CRDS needs very specialised lab tests that take a long time and are not widely available, making it difficult for doctors to identify the condition quickly.

What is 'pacing'?

Pacing in this study means using a temporary device to make your heart beat fast for a very short period, so doctors can observe how it reacts and identify specific patterns.

Will I get any medication if I join?

The study itself is focused on diagnosis, not treatment. However, some medications might be part of your existing healthcare, and the study team will discuss with you if any of your current medications could affect your participation.

Is this a new treatment for CRDS?

No, this study is not testing a new treatment. It's investigating a new way to diagnose CRDS earlier and more easily.

How to find out more

Jason Roberts, MD MAS

jason.roberts@phri.ca 905-297-3479 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.