For patients interested in research participation.
BeaconCR helps patients connect with physician-directed registries and observational studies when available.
Submitting interest does not guarantee treatment, enrollment, eligibility, insurance coverage, or access to an investigational therapy. A licensed physician and the appropriate research oversight process determine whether participation is appropriate.
How participation works
- You submit interest through a registry-specific intake form or by physician referral.
- The study team or your treating physician reviews your information and determines eligibility.
- If you are eligible and choose to participate, you complete informed consent.
- You complete baseline questionnaires and the study collects information at scheduled follow-up visits.
- You can ask questions, decline to answer specific items, or withdraw at any time.
Patient education
What is an observational registry?
An observational registry collects information about patients who are receiving (or have received) a particular treatment, condition, or procedure — without changing their care. It tracks outcomes over time.
What is informed consent?
Informed consent is a written agreement explaining the purpose, procedures, risks, benefits, alternatives, and your rights as a participant. You can ask questions, take time to think, and decline or withdraw.
What happens to my data?
Your data is stored with encryption, access controls, and audit logging. It is used only for the study you consented to. It is not sold to advertisers or shared with anyone outside the study team without your authorization.
Can I withdraw?
Yes. You can withdraw from a registry at any time. Data collected before your withdrawal is preserved per your consent; no further data is collected after withdrawal.
Who decides if I qualify?
A licensed physician determines whether you are eligible for a registry, treatment, or compassionate-use pathway. BeaconCR organizes the intake; it does not decide who qualifies.
Research vs. treatment
Research participation collects information about outcomes. It is not the same as receiving guaranteed treatment. Your treating physician decides what care is appropriate; the registry tracks what happens.
Ready to share your interest?
Submitting an intake puts your information in front of the relevant physician or study team. They will decide on next steps.
Submit Patient Interest