For Patients
Your experience with an innovative therapy matters — not just to you, but to every patient who comes after you. Here is how participating in a Beacon-supported registry works.
How it works
Your provider invites you
If your doctor is using Beacon to track outcomes from their therapy, they will send you a unique enrollment link — either in-office on a tablet or by email.
Electronic consent, on your phone
Read the informed consent document at your own pace. You can sign, save for later, print for your records, or decline. Your choice — no pressure.
Answer questionnaires on a schedule
You will get short, structured surveys by email or text — baseline, then at intervals your doctor specifies (often 4 weeks, 12 weeks, 6 months). Most take under ten minutes.
Your data contributes — anonymously
The data you share is de-identified and pooled with other participants to characterize how the therapy performs in real-world use. Published findings help future patients make informed choices.
Privacy & data rights
Every registry Beacon operates is reviewed by an Institutional Review Board (IRB) before enrollment opens. The IRB is an independent ethics committee whose job is to make sure your rights and welfare are protected.
We follow the HIPAA Privacy Rule for U.S. participants and the GDPR for E.U. participants. That means: your health data is encrypted in transit and at rest; access is logged; only the study team sees your identifying information; de-identified data is used for analysis and publication.
You always have the right to see your data, correct it, request a copy, or delete it entirely. Email patients@beaconcr.com with any of those requests and we will handle it within the timelines the law requires.
Frequently asked questions
Is this a clinical trial?
No — it is an observational registry. You are not being randomly assigned to a treatment or a placebo. You are receiving care your doctor has already recommended, and you are voluntarily reporting your experience along the way.
Do I have to pay anything?
Enrollment and participation are always free to you. The physician or clinic sponsors the registry operation. Your insurance handles the clinical care itself as it normally would.
What if I want to stop?
You can withdraw from the registry at any time, for any reason, with no impact on your clinical care. Simply click the unsubscribe link in any questionnaire email, or email us directly.
Where does my data go?
Into a secure registry database accessible only to the study team and, in de-identified form, to the analysts who prepare summary reports. Your name, address, and date of birth are never shared in publications or press releases.
Will I see results?
Yes — registry participants receive periodic summaries of aggregate findings by email, and any peer-reviewed publications that come out of the study are shared with you first.
Your voice shapes the evidence.
Innovative therapies get their chance at mainstream adoption only when patients willing to share their experience make it possible. Thank you for considering it.
Contact the patient team