Patient Guide
Joining a clinical trial can feel overwhelming. This guide walks you through every step in plain language, from finding a trial to completing it.
Your rights
Participating in a clinical trial is always your choice. You can withdraw at any time, for any reason, without losing your regular medical care. No researcher or doctor can pressure you to participate or stay in a trial.
Step by step
Step 01
Use RareTrial (or ClinicalTrials.gov directly) to search for trials for your disease. Filter for "Recruiting" status to see only studies that are actively looking for participants.
Your specialist may also know of trials that are not yet listed publicly. Ask them at your next appointment.
Tip: Patient advocacy organizations for your disease often maintain lists of current trials. Search for "[your disease] foundation" or "[your disease] alliance" to find them.
Step 02
Every trial has inclusion criteria (things you must have to qualify) and exclusion criteria (things that would rule you out). These protect participant safety and ensure the study collects reliable data.
Common criteria include: age range, diagnosis confirmed by specific test, no previous use of certain treatments, ability to attend appointments, and lab values within certain ranges. If you are unsure whether you qualify, contact the study team - they will screen you properly.
Step 03
Each trial listing includes contact information - usually an email or phone number for the study coordinator. Reach out directly. Be ready to share your diagnosis, age, any prior treatments, and current medications.
If a trial has multiple sites, contact the one geographically closest to you. If that site is full, they can often refer you to another location.
Step 04
The study team will conduct a pre-screening, usually by phone or a brief in-person visit. They will confirm you meet the basic eligibility requirements before scheduling a full screening visit.
This is not yet enrollment. You are simply checking whether it is worth proceeding to the formal screening stage.
Step 05
The screening visit involves medical tests (blood work, imaging, questionnaires) to confirm you are eligible. This visit is often covered by the trial sponsor, even if you are not ultimately enrolled.
After screening, the research team reviews your results. This can take days to weeks. Some people pass screening, some do not - this is normal and does not reflect on you.
Step 06
If you pass screening, a researcher will walk you through the informed consent document. This explains the purpose of the study, what you will be asked to do, what the known risks are, what benefits you might receive, and what alternatives exist.
Take your time. Ask every question you have. Bring a family member or advocate. You are not obligated to sign immediately.
Key right: Signing informed consent is not final. You can withdraw from a trial at any point after signing, and your regular medical care will not be affected.
Step 07
Once enrolled, you will follow the study protocol - attending scheduled visits, taking the study medication (or placebo), and reporting any side effects or health changes to the study team.
Keep a journal of how you feel between visits. The study team wants to hear about any changes, no matter how minor they seem. This information is important for everyone who comes after you.
Step 08
When the study ends, researchers will typically share results with you. Ask the team about open-label extension studies - these sometimes allow you to continue on the experimental treatment if it showed benefit.
Many trials have follow-up periods after active treatment ends. Keep attending these visits - the long-term data you provide is often the most valuable of all.
What to expect
Usually covered
Usually not covered
Financial assistance: Programs exist to help cover costs not covered by the trial. See our financial assistance directory for grants, travel funds, and disease-specific help.
Ready to start?