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A Beginner’s Guide to Participating in Endometriosis Clinical Trials

A Beginner’s Guide to Participating in Endometriosis Clinical Trials

It is no secret that there is a significant need to increase the amount of research done on endometriosis. As patients you can help research efforts by participating in clinical trials. If you’ve never participated in a clinical trial before, there are some simple steps you can take to get up and running.

How do I find out about trials to participate in?

The best source to find information on ongoing clinical trials is the website clinicaltrials.gov. This is a resource provided by the U.S. National Library of Medicine and National Institutes of Health. It contains a robust database of clinical trials being conducted in the U.S. and internationally.

Here are a few key tips for searching on clinicaltrials.gov:

  • Keyword search: On clinicaltrials.gov you can search by keyword to find trials on a given subject. For example, you can search by the keyword “endometriosis”.
  • Trial status: When doing a search, you’ll want to make sure that you search for trials that are either “recruiting” or “not yet recruiting”. If a trial is recruiting that means it is actively accepting new participants. If it is not yet recruiting, that means that the trial has not started accepting participants yet but will be in the future.
  • Location: Many trials are run in multiple research centers across the country (or even the world). To find a trial near you, you’ll want to search by location.

I’ve found a trial I want to participate in, what do I do next?

On clinicaltrials.gov, they list the location where the clinical trial is being conducted. This will typically be a hospital, physician practice, or clinical research center. Generally, these are known as “research sites”. Sometimes contact information is listed on clinicaltrials.gov. If the contact information is not listed, you can reach out directly to the research site by finding the contact information on Google (for example, calling the OBGYN research department at the hospital). If the trial is being run by a large company such as a pharmaceutical company, they may have a website that can help you find the right contact information to participate.

What do I need to consider when deciding whether to participate?

Once you’ve contacted the research site, the process of signing up will begin. It is very important to carefully consider whether you want to participate.

Here are a few things to think through as part of your decision-making process:

  • Type of trial: There are a wide variety of types of clinical trials. Some are testing an experimental medication and include a placebo group (group that doesn’t get the treatment). Others are simply testing a new patient-facing software program. Deciding whether to participate in these different types of trials is a matter of personal choice.
  • Risks involved: As part of the sign-up process, you will go through an informed consent process. During this process, a research coordinator will speak with you about what the clinical trial participation consists of and what the risks of participating are. Some trials are low risk, and some carry more significant risks. You will want to make a decision based on your personal risk threshold.
  • Time commitment: Many clinical trials require a significant time commitment of going to appointments, getting tests, and filling out forms. Some are only a few months long while others last a few years. You will want to ensure that you can commit to the time needed to participate in the trial.
  • Incentives: Some clinical trials do include incentives such as covered screenings or extra medical care, the ability to earn points and redeem gifts, gas gift cards, or other items. These are designed not to coerce people into participating in clinical trials but do provide some small incentives to participate. You will want to determine if these incentives are important or valuable to you.

Make sure to ask the research coordinator and research team all your questions so that you can make an informed decision about whether to participate or not.

What is it like to participate in a trial?

The experience of participating in a clinical trial varies based on the type of trial, risks, and time commitment. The experience can certainly be very rewarding, since regardless of the scientific results of the trial, you’ll be contributing to research and helping future endometriosis patients.