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