Get Involved in Research

Research Studies and Clinical Trials

This is an exciting time for those with SADS conditions because there is so much new research happening and a greater push for new therapies! You may be wondering what this means for you and your family, how you can be involved, and how you decide what research opportunities or clinical trials are right for you.

Research Studies

There are many different types of research. Different types may be used depending on what researchers are looking at. These are some types of clinical research.

  • Treatment Research generally involves an intervention such as medication or therapy.
  • Diagnostic Research looks for better ways to identify a condition.
  • Screening Research aims to find the best ways to detect certain health conditions.
  • Quality of Life Research looks at ways to improve quality of life for individuals with a chronic illness.
  • Genetic studies look at how genes and illnesses may be related.

Clinical Trials

Clinical trials are conducted to make sure new drugs, gene therapies, ICDs etc. are safe and effective before they can be approved by the FDA. There are many different phases in clinical trials, and each phase can take several months to several years to complete. This means there will be LOTS of opportunities to participate in clinical trials – both now and in the future.

A few key things to know before participating in research or clinical trials:

  • Make sure to talk about the potential risks, benefits, and uncertainties with the trial’s investigators, your healthcare provider, and your loved ones.
  • Clinical trials play a crucial role in advancing medical knowledge and treatments, but being the first to sign up for a clinical trial may not be right for everyone. In some cases, later-phase trials with more participants and safety data might be a more suitable option for those seeking to contribute to medical research while minimizing risks.
  • Ensure that you fully understand the informed consent process, which provides comprehensive information about the trial’s objectives, procedures, potential risks, and your rights as a participant.

Research Studies

The following studies are currently recruiting participants. Review the eligibility criteria and contact the researcher for more information or to get started.

ORCCA Study Outcomes Registry for Cardiac Conditions in Athletes
Safety of sports for Patients with S-ICDs
CPVT Survey on Patient Experience
SADS Research Survey
International Pediatric CPVT Registry Research
ARVD/C Research Studies
Link My Heart – Brugada Project
Study of People with Unexpected SADS Genetic Results
Reproductive decision making in patients and families affected by cardiac genetic diseases
Long QT & Pregnancy – Mobile Fetal Magnetocardiography

Clinical trials

Phase 2 Trial of ARM210 for the Treatment of CPVT
Clinical Study for Long QT Syndrome Types 2&3
Clinical Research Study for Hypertrophic Cardiomyopathy (HCM)

Learn More

Children & Research

Clinical Trials

Information About Gene Therapy