Interested in participating in a clinical trial but don’t know where to begin? That answer may be a clinical trial registry. These resources can be useful in finding research studies that might work best for you and your health concerns. We take a look at clinical trial registries and how you can use them to help identify a trial match that may be right for you.

What Are Clinical Trial Registries?

Online databases of trials, better known as clinical trial registries are central repositories of information that enable researchers, healthcare organizations, and members of the public to easily locate details on clinical trials taking place around the world.

The major functions of clinical trial registries are:

• Open Access: Sharing information about clinical research in an open and transparent way
• Accountability: Requiring that trials be registered and results reported
• Time Saver: Minimizing duplication of research efforts
• Patient Navigation: Directing possible volunteers towards appropriate clinical trials

Various Clinical Trial Registries

Though different geographic regions or types of research may have separate major clinical trial registries, here are a few of the best known registries:

• gov: Maintained the U.S. National Library of Medicine
• ISRCTN Registry: A World Health Organization (WHO) recognized international registry
• EU Clinical Trials Register: A registry for clinical trials across the European Union
• The WHO International Clinical Trials Registry Platform (ICTRP): A world database that combines records from national and regional registries

How Patients Benefit from Clinical Trial Registries

Clinical trial registries help patients because:

• Information: You can find out about clinical trials that may be currently studying your condition
• Control: With registries, you have the power to be an active participant in your care!
• More Choices in Treatment: Become aware of and possibly try new treatments that are not currently an option through the standard-of-care.
• Contribution to Scientific Knowledge: If you participate in a trial, it may not benefit your health but advances medical research for future generations.

Using Clinical Trial Registries

Although clinical trial registries are potentially valuable sources of information, they can be difficult to use. Each registry is different but here are a few points to help you to search for trials:

1. Find a Registry: Begin with ClinicalTrials.gov, or EU Clinical Trials Register if you are in the European Union.
2. Search: Type a keyword associated with your condition, e.g., type 2 diabetes or breast cancer, and then press Enter.
3. Filter: Refine results by locations, trial phase, and recruitment status.
4. Examine Study Specifics: Eligibility criteria, design of the research, and take into account potential risks/benefits. The text can be confusing so ask a healthcare professional if you do not understand something.
5. Write Down the Contact Information: In case you find a trial that sounds right and want to learn about enrolling, keep a record of the site running the trial and reach out to learn more.

Clinical Research-Friendly Clinical Trial Registries — Debunking Myths

There is a lot of misinformation surrounding clinical trial registries that we need to set straight:

• Myth: Registries Ensure Trial Involvement
  • Fact: Registries give you information, not a free pass to take part in research.
• Misconception: Every listed trial is recruiting
  • The Reality: Registry lists include studies that are both active AND completed, so be sure to take note of the recruitment status before reaching out.
• Myth: All trials are to be found on registries
  • The Truth: Most large registries are inclusive, but not all the trials will be listed and smaller or early phase studies may not be listed.

Challenges Associated with Browsing Clinical Trial Registries

The clinical trial registries are useful but may be somewhat complicated for patients, as I have heard from many patients over the years.

• Developmental Complexity: When medical and research terms can be overwhelming.
• Drowning in Data: More and more information can lead to too much information that is hard to understand.
• Some Registries are Researcher-Friendly, not Patient-Compatible: Complex search process makes finding the right trial a tedious task.

Simple Access: Supporting You to Find Clinical Trials

These are the problems that companies like pRxEngage address, making it more straightforward to find clinical trials. The idea behind these platforms is to list trial information in a more patient-friendly fashion so that it’s understandable to the majority, in order for you to locate studies that may fit your needs.

Key Points to Remember

When using clinical trial registries:

• Take your time to understand the information provided
• Consult with your healthcare provider about potential trials
• Be aware that eligibility criteria may be strict
• Remember that participation is voluntary, and you can withdraw at any time

Clinical trial registries are powerful tools that can connect you with potentially life-changing research. While they may seem daunting at first, with patience and persistence, you can use these resources to find trials that align with your health goals and preferences.

Through taking part in clinical trials whether that is through a clinical trial registry or via another source, you are contributing to the development of medical research and possible future treatments. Whether managing a chronic condition or interested in helping to build knowledge toward new treatments, clinical trial registries provide a way to stay at the forefront of medical research.