How to use ClinicalTrials.gov without getting lost

This page is for patients and families who want to search ClinicalTrials.gov for cancer studies. It covers what the site is, what a study record contains, how to search, and what the site cannot do for you.

ClinicalTrials.gov is a website and an online database of clinical research studies and information about their results. Its stated purpose is to share that information with the public, with researchers, and with health care professionals.

That word "database" matters. The site is a place where study information is stored and displayed. It is not a service that reviews studies for you or picks one out.

The site says this about itself in plain terms. The U.S. government does not review or approve the safety and science of all studies listed there. The National Institutes of Health and other federal agencies approve only the studies they fund, and federal agencies do not fund everything on the list.

Sponsors and investigators submit the study information themselves, and they keep it updated. The National Library of Medicine does a limited review of what they send. The sponsor or investigator remains responsible for the safety, the science, and the accuracy of any study they list, and for following the laws that apply to it.

Some listings are there because the law requires it. The United States has laws, regulations, and policies that require certain types of clinical trials to be submitted. For studies that are not covered by those rules, sponsors may choose to list them or not. Few policies require observational studies to be listed anywhere public.

So the database is broad but not complete. New studies are added almost every day, and listings cover all 50 states and more than 200 countries.

Each study gets a record, and the record is the part you will actually read. It includes general information: the study name and description, the sponsor or investigator, who funds or supports it, the health problem being studied, the start and end dates, and the locations.

Then come the specifics:

• Who can and cannot join, which is the eligibility criteria.
• How many participants are needed.
• A description of the interventions that may be given, such as a drug, a device, or a behavior change.
• What the researchers want to learn and how they will measure it.
• How to contact the study staff.

Every version of a record is kept permanently, and the information stays available even after a study ends. That explains something confusing about the site. Many records you find are for studies that finished years ago.

It can show you what exists. If you want to know whether anyone is studying your type of cancer, and where, this is the place to look.

Start with the basic search on the home page. It has four filters:

• Condition/disease. Enter one condition at a time.
• Intervention/treatment. Enter a specific drug, device, procedure, or lifestyle change.
• Location. This accepts your current location, an address, a zip code, or a place name. A radius bar sets how far you would travel.
• Study Status. This starts on all studies.

That last one is the single most useful change to make. Switch it to recruiting and not yet recruiting studies, and the noise drops sharply.

A few habits help:

• Put quotation marks around a phrase of two or more words, so "breast cancer" is searched as a phrase.
• Type the word NOT in capital letters before a term you want to exclude.
• Leave the Other terms box empty unless you have something that fits nowhere else, such as an NCT number (the study's ID), a study acronym, a gene name, or an outcome measure.
• Use English spellings. They work best in most filters.

If you get too many results, add filters. You can do that before searching, using the More Filters bar, or afterward with the Focus Your Search menu on the results page. The number beside each filter tells you how many of your results match it.

It can also show you results for some studies. Results must be submitted within one year of study completion in most cases. Staff review submitted results for clarity, not for scientific accuracy.

And it can give you a phone number or an email that leads to a real person. Every record includes contact information for the study staff.

It cannot tell you whether a study is right for you. Eligibility criteria are written for researchers, and reading them next to your own records is a job for your oncology team.

It cannot vouch for a study's safety or quality. The site is explicit that no such blanket review happens.

It cannot enroll you. Joining goes through the study team and your own doctors.

It cannot interpret findings for you. Results are checked for clarity, not scientific accuracy, so talk them over with your oncology team.

And it cannot promise that a listing is still open. A record may be complete, withdrawn, or years old.

Search once with wide filters to see the landscape. Then narrow to recruiting studies within a distance you could actually manage. Save the NCT numbers of anything that looks close.

Then stop reading and bring those numbers to your appointment. The site is at its best as a way to arrive with specific questions, not as a place to make a decision alone.

• ClinicalTrials.gov, About ClinicalTrials.gov (National Library of Medicine)
• ClinicalTrials.gov, How to search
• FDA, Expanded Access information for patients