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.

The survey asks questions about demographics, general health, and fibrolamellar-specific questions around symptoms, diagnosis, treatments, clinical trials and more. You can also decide to upload test results. 

Scientific researchers who have been approved by both their Institutional Review Boards to study fibrolamellar and by the Fibrolamellar Registry’s own Data Access Committee will be able to read and download your data. Note that all data is completely anonymous; all shared records are stripped of PII (personally-identifying information). Researchers can then 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 can also use it to analyze the effectiveness of different treatment regimens in order to improve patient care. The FibroRegistry team may 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 and the WCG Institutional Review Board.

This is entirely up to you. When you register, you have three privacy options. Option one: you allow email contact from a fibrolamellar researcher who has already been approved by both their Institutional Review Board and the Fibrolamellar Registry. Option two: you prefer the Registry ask you first before allowing any researcher to contact you. Option three: you can choose not to consent to allowing any researcher contact. You can change any privacy option decision at any time. 

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 or the parent, child, sibling, partner or caregiver of a patient, living or deceased — we invite you to join.

Study data are collected and managed using REDCap electronic data capture tools hosted at the Fibrolamellar Registry’s HIPAA-compliant website. REDCap (Research Electronic Data Capture) is a secure, web-based software platform designed to support data capture for research studies, providing an intuitive interface for validated data capture and audit trails for tracking data manipulation and export procedures.  REDCap’s software is used by over 6,000 medical and scientific institutions worldwide, including the medical schools at Stanford, Harvard and Yale. To learn more, visit https://www.project-redcap.org/