FAQ: The Registry


Registry Overview

A patient registry is a collection of information about patients who have a common disease. The information can include the results of a group survey, narratives about the patients’ medical histories and even copies of their test results. Sometimes, all this data can be linked to actual physical tumor or blood samples they have donated to a tissue repository. The purpose is to aggregate data in order to find hidden trends and correlations, hopefully leading to earlier diagnoses, better treatments and, perhaps, a cure.

What information and how much information you want to store in the registry is up to you. The survey asks questions about demographics and general health, as well as fibrolamellar-specific questions around symptoms, diagnosis, treatments, clinical trials and more. You can also decide to upload test results.

This is entirely up to you. When you register, you will have the option of keeping your information locked so that only you can access it. You can also decide to allow researchers addressing fibrolamellar — whose work must be approved by their Institutional Review Board — to either view and/or download your anonymous records and/or to contact you (or not) for further study. You can change any privacy option decision at any time. Finally, if you want researchers studying other cancers to utilize your data, you have the option of allowing that, too.

Researchers who have been approved by their Institutional Review Boards to study fibrolamellar and other cancers will be able to read, analyze and download your anonymous data, depending on what you allow. They will use this information to look for hidden trends and correlations in their quest to learn what causes fibrolamellar and how to diagnose it earlier. They will also use it to analzye the effectiveness of different treatment regimens in order to improve patient care. The FibroRegistry team will also collect and share data trends directly with the fibrolamellar community. The survey has been approved as a scientific study by the Genetic Alliance Institutional Review Board.

Our goal is to have every single patient in the fibrolamellar community participate. That’s because the more people who join, and the more information they share, the more useful the Registry will be to the doctors and scientists studying this disease. 

If you are a patient your self — or the relative, friend or caregiver of a patient, living or deceased — we invite you to join.