We’re proud to announce the launch of Prion Registry, an online registry for people who want to participate in research on prion disease. This includes everyone: symptomatic patients, people who are healthy but at risk, and people who don’t have any particular risk but just want to volunteer for research. Sonia has explained the motivation and goals of the registry in detail in a blog post, but here is a quick rundown for CureFFI.org readers.

Why do we need an online registry?

By launching Prion Registry, we aim to solve a few problems at once:

  • Help patients find research studies to participate in. Every week, Sonia and I get email from people who want to know how they can help and how they can volunteer for research. Prion Registry allows people to find research studies they can volunteer for.
  • Help researchers recruit participants. Recruiting enough participants can be the hardest part of launching a clinical research study, especially in a rare disease like prion disease. Prion Registry allows researchers to help reach people who want to volunteer.
  • Lay the groundwork for future clinical trials. We’ll never get a drug for prion disease without a clinical trial and, as noted above, recruiting participants can be a hard part of any study, including a clinical trial. What’s most worrisome is that the prospect of recruiting for a clinical trial in a rare disease can be so daunting that it might deter potential funders or researchers from developing a drug or bringing it to clinical trials in the first place. This registry is our chance, as a community of people affected by prion disease, to organize ourselves — to stand up and be counted — and show that the path to a drug for prion disease is feasible.

So what is it?

Prion Registry is a website where you can sign up and fill out a 10-minute medical questionnaire to give us basic information about yourself, and view a list of research studies that are currently recruiting. The choice of whether to take the next step, and contact a researcher or enroll in a study, is always in your hands.

Who’s behind this?

Prion Registry was developed as a partnership between CJD Foundation, CJD International Support Alliance, and Prion Alliance. The website was built with time generously donated by the Broad Institute’s Data Donation Platform.

Cool, what else should I know?

Just to be clear, enrolling in the registry will not have any direct benefit to you. The registry is not offering any clinical treatment, and, as of this writing at least, all of the studies in the registry are clinical research, NOT clinical trials of experimental drugs. Right now the registry provides information on participating in research that will help advance the science of prion disease. And in the long run, it is a tool to help our community stay informed and move together in the right direction.

I’m a researcher, how can I use the registry?

If your study is already IRB-approved and you would like to list it in the registry, just contact us (or you can contact CJD Foundation or CJDISA) and we’ll send you a form to fill out with information on your study.

If you’re planning a future study and want some up-to-date general statistics to put in your grant application (such as “how many participants are enrolled in my country?”), contact us and we can pull up some numbers for you. But note that the registry never gives out contact information or any other individual information about potential research participants to researchers — rather, it’s a way for you to post a study and have volunteers contact you.