If you know other clinical trials information, please email us at: contact@livingwithfcs.org
List of current clinical trial studies
| Study name/link | short intro |
| The Balance study (link) | Purpose: To evaluate the efficacy of AKCEA-APOCIII-LRx as compared to placebo on the percent change in fasting triglycerides (TG) from baseline. Study Start Date: November 18, 2020 Estimated Study Completion Date: June 2023 |
| The Palisade study (link) | Purpose: To evaluate the efficacy and safety of ARO-APOC3 in adult participants with FCS. Study Start Date: January 11, 2022 Estimated Study Completion Date: December 2023 |
| More studies on ClinicalTrials.gov | an updated list of active clinical trials. |
General steps of participating in a clinical trial study
- Search for current active studies.
- Review eligibility criteria.
- Contact the study organizers.
- Review the study description.
- Learn about informed consent.
1. Search for current active studies
You can start searching for trials online. ClinicalTrials.gov is a database of U.S. trials maintained by the National Institutes of Health (NIH). For FCS-related trials, you can search for “Hyperlipoproteinemia Type I“, “Familial Chylomicronemia“, or “Lipoprotein Lipase Deficiency” (if you know a better search phrase, please drop up a message to contact@livingwithfcs.org). Then you can choose the current ones by applying a status filter to “recruiting“. If you want to also see the trials that are on the horizon, apply the status filter “Not yet recruiting“. This will narrow down the list for you to review.
2. Review eligibility criteria
Each clinical trial is different. Some are selective and some are very general in terms of their eligibility criteria. The first thing you need to check is whether you are eligible for the specific study. If you are not, you can skip it before you spent time furthering your research.
3. Contact the study organizers
Once you find a study you are eligible for and interested in participating in, you should contact the study organizers. you can usually find their contact information. A phone call is usually the most effective way to contact the organizers. During such a phone call, you will be expected for a brief screening to determine your eligibility, and then you can ask questions that you might have. Before the phone call, you can write down the questions you might have to make sure you don’t forget any important ones.
4. Review the study description
Once you have a conversation with the study organizers, and you decide to participate, they usually will start the process by sending you detailed information about the study. Read them carefully, to understand the purpose, the method, the procedures, the safety measures, etc. Make sure to ask questions if there is any aspect you are not clear. It is highly recommended to review the study with your doctor before moving on.
5. Learn about informed consent
Once you decide to participate in a trial, the clinical trial researchers will start with an informed consent process. Informed consent is the process of learning about a clinical trial. At this point, you are still deciding whether you are going to commit to the study. The research team running the trial will explain the trial’s purpose, how long it will take, what will happen, all potential risks and benefits, and information on the privacy of your medical records. Again, ask questions, know your rights. One right you have is that you can terminate your participation at any time without explaining yourself. Don’t feel obligated to continue when you don’t want to.
Informed consent continues throughout the trial. This means the research team will keep updating you with the study. And you should update the researcher any time you feel uncomfortable.
Last updated: 03/06/2022