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Patient guide

How to find clinical trials (without losing your mind)

Nilu Kundagrami7 min read

Having an illness can be tough enough, but now you've found yourself at a crossroads. Your treatment might have lost all effectiveness, or you might have had limited options to begin with, thanks to the rarity of your diagnosis. Someone might have mentioned you possibly starting a clinical trial. The thing is — how would you know where to begin your search?

Attempting a search can feel like a Herculean task, and it's one that thousands of patients face annually. There are numerous obstacles, including the lack of central resources (many websites provide different information), a database that is not user-friendly, and trying to decipher medical jargon alone can cause a headache. This can leave you feeling exhausted and discouraged, which isn't good for your health, either.

There's hope, though. You can find accessible clinical trials by using certain strategies and tools that can ease your burden. This guide, for example. It'll show you exactly where to look and how to find the information you'll need. Best of all, it'll show you how to understand what you're reading.

Yes, finding this information will take effort, but this guide will make it easier than doing it yourself. Let's take a look at the options.

The federal database: comprehensive but challenging

Most people use ClinicalTrials.gov, the federal database maintained by the National Institutes of Health, as their starting point. It's the most comprehensive source available, listing over 400,000 studies from around the world. If any company wants to start a trial, for the most part, they are required by law to register here. That makes it as close to a complete database as any. You can look through it for free.

As great as this sounds, it's not designed for the everyday patient. The database is set up for researchers, not patients. That means that the search function is highly technical, which can lead to a lot of frustration.

On top of that, you can get tens of thousands of results for what seems like a simple search term like "breast cancer." Then you need to try to read the eligibility criteria, which is written in medical shorthand. The researchers could understand it, but you probably won't.

Does this mean you should skip it? No. You can enter the specific diagnosis instead of your general disease category. Then you can use filters to narrow things down even more, like where the trials are located, and a status that says "Recruiting." This can lead to trials that you might not have found elsewhere.

Disease-specific organizations: hidden goldmines

Here's where you can find allies besides your family and friends. Contact any organization that's dedicated to your condition; they can have a treasure trove of resources. For example, if you have Leukemia or Lymphoma, you could contact the Leukemia & Lymphoma Society to see what their trial database might hold.

This is true whatever your condition. See what specific organizations are there, and don't hesitate to reach out to them. They are there to act as an advocate for you when it comes to researching trials. Their staff members are always in the loop when it comes to anything new coming down the road, often finding out about trials before they're publicized, which can be a boon.

Also, they pay close attention to what is going on in the trial field. Is there a certain one that patients are getting excited about? They can also point you to the research centers that have the best reputation when it comes to their approach toward certain treatments.

Do you have a rare disease? Then, finding a relevant patient advocacy group should be your first priority. You can benefit from their skills when it comes to navigating the search minefield. Social media can be tremendous here, too, since there are often groups on sites like Facebook or Reddit. Your motto with those should be "Trust, but Verify." That means researching any potential trials that they mention first before diving in headfirst.

Academic medical centers and research hospitals

Are you near a university hospital, NCI-designated cancer center, or an academic research center? It'd be a good idea to reach out to them since you could get a heads-up on a trial — they often have ones in development or early recruitment that haven't been posted on databases. One call or email to their research office could yield results that you might not have found on your own.

Larger hospitals even typically have clinical trial navigators or research coordinators on staff whose job is devoted to explaining to patients what's available. Don't worry, these staff members do this all day and will put you at ease when you call them. Just ask them a direct question like "Are there any clinical trials recruiting for my condition?"

When you do that, the navigator will ask about your diagnosis, your treatment history (if any) to date, and your general health status. They may even do a preliminary screen over the phone and suggest any trials.

You don't have to limit your search to local hospitals, either. If you do get into a trial that's out of town, they usually cover travel costs and lodging. They even have some trials that are "decentralized," which means they have remote monitoring, local lab work, and telemedicine visits. That means you might only have to go to the main site a few times over the course of the trial.

What to gather first

Don't rush headlong into the trial search, though. It might seem obvious, but patients don't always have easy access to data that the people running the trials will need. It's better to get the following information before searching:

  • Your exact diagnosis — including any subtypes or biomarkers. Let's say you have cancer. You want to know the molecular profile of your tumor, like whether it's HER2-positive, EGFR-mutated, PD-L1 high, or if it has other characteristics that could affect treatment. If you have Crohn's, you should know what part of your GI tract is affected and whether you have complications like strictures or fissures.
  • A clear history of prior treatments — the people running a certain trial might require that you've exhausted certain treatment types. Then some might want to bring in people who haven't had any therapy at all. Being able to provide this can prevent any dead ends.
  • Other basic information — overall health status, what medications you might be taking, any recent lab results, and any recent imaging results.

What if you don't have these on you? You can usually get many of them through a patient portal, and your doctor's office can send over the rest. You have a legal right to these records, and you can usually get them within a few weeks.

AI-powered matching: doing the heavy lifting

Even when you do all of the above, doing the matching process can be really stressful. Let's say you've found a trial that seems relevant. Do you actually meet all the criteria? Are you ready to devote hours of careful reading, since the criteria are usually written in medical shorthand? If you miss one seemingly minor detail in one paragraph, you could wind up wasting a lot of time — or even miss a trial that you'd be perfect for since you couldn't interpret the criteria. No stress, right?

This is where AI-powered matching platforms are starting to make a real difference. Services like Trialytics use artificial intelligence to compare your medical information against the eligibility criteria of thousands of trials simultaneously. Instead of searching trial by trial, manually checking each one, you upload your records once, and the system continuously scans for matches. When a new trial opens that fits your profile, you get notified automatically, including trials you never would have thought to search for.

AI isn't a magical genie, but if you pair it with the judgment of your medical team, you can save a lot of time searching. As a result, you can increase your chances of getting a trial that you qualify for. This can be a tremendous help for people with complex medical histories, multiple conditions, or rare diseases, where time is of the essence.

Making sense of what you find

Here comes another thing you need to understand about your research results. What phase is your potential trial in? If it's Phase 1, then it's pretty small, possibly confined to between 15 to 30 people. This number allows them to focus on safety and dosing. A Phase 2 trial is larger, bringing in around 50 to 200 people, and the researchers are seeing if it works against the disease. A Phase 3 trial is huge, with hundreds or thousands of people, and the researchers are comparing the results to the current standards of care.

Each phase carries different considerations. Earlier phases may offer access to truly novel treatments, but there is less certainty about outcomes, and they sometimes have more monitoring requirements. Later phases usually mean more data about how the treatment performs and what side effects to expect, but eligibility criteria tend to be stricter. Neither is inherently better — it depends on your situation, your priorities, and available options.

Pay attention to what the trial is actually testing. Some study brand-new treatments that have never been given to patients before. Others compare different doses of existing drugs, test new combinations of approved medications, or try approved treatments for new conditions. Some trials give everyone the investigational treatment; others use randomization, meaning you might receive either the new treatment or the current standard of care — or in some cases, a placebo. Understanding the trial design helps you know what you're actually signing up for.

Getting help when you need it

Finding a trial isn't something that you have to do alone. Patient navigators at cancer centers and large hospitals specialize in helping people find trials. Social workers can connect you with resources. Nurse coordinators at research centers answer these questions daily. Your own oncologist or specialist can be valuable, though you may have to be your own best advocate in that regard.

Come to appointments prepared with specific questions. "Are there any trials you think I should consider? Are there treatments in development that might be relevant to my situation? Would you refer me to a research center if I find a trial that interests me?" Doctors are busy, and they may not think to mention trials unless you bring it up directly. That's not a criticism — it's just reality. Your initiative matters here. The patients who find trials are usually the ones who ask.

Taking the next step

Clinical trials represent real opportunities — treatments you might not have access to any other way. Finding them takes effort, and not every search ends with a perfect match. Patients who actively look tend to locate more options than those who wait.

Start by gathering your medical records. Spend some time on ClinicalTrials.gov, frustrating as it can be. Reach out to disease-specific organizations that know your condition inside and out. Contact research centers directly. And don't hesitate to ask for help from navigators, coordinators, and your own medical team.

You deserve access to every treatment option that might help you. The search isn't easy, but it's worth doing.