Fibroregistry.org is run by patients with a rare pediatric/ young adult liver cancer called fibrolamellar hepatocellular carcinoma, and their family members. It's a place to both share information on this disease and gather it, as we believe pooling our knowledge will bring us better diagnostics, treatments and, one day, a cure.
The site is the home of the Fibrolamellar Registry, which launched October 2016. We are partners with the Fibrolamellar Tissue Repository, which stores fibrolamellar tissue samples, making the Registry data twice as useful. We're also part of the National Patient-Centered Clinical Research Network (PCORNET) as members of the Genetic Alliance's Community-Engaged Network for All (CENA). The Registry is a non-profit organization.
What's a patient registry and why is one needed?
A patient registry is a collection of health data about patients with the same disease, stored in a highly secure database. It's a comprehensive, online survey that gathers medical histories and test results. The Registry meets the highest standards for privacy and patient protection and has been approved as a scientific study by the Genetic Alliance Institutional Review Board.
The Registry allows us to link our community's health data with the scientists, physicians, collaborating hospitals and research institutions around the world studying our disease. Our goal is to spur and speed research, to develop a diagnostic test and, ultimately, effective treatments.
Currently, there is no single place, website, institution, or clinician collecting the information on different therapeutic treatments for fibrolamellar. This lack of knowledge is sorely limiting our progress in fighting this disease. Simply put, there isn't enough patient information, history or tumor samples at any one institution to build up a collective knowledge on the cause(s) of fibrolamellar and, more importantly, the effectiveness of different therapies for it. But, through this registry and the crowd-sourcing power of the web, we have the power to reach out to hospitals, clinicians and researchers all over the world.
How do I join the Registry?
Fibrolamellar patients, their parents, children and spouses/partners are invited to take the survey. We are collecting information about patients both living and deceased. Authorized family members, friends and caregivers may also contribute.
How can I help?
There are many ways to help! Taking the survey is the best way. You can also donate, as we are an all-volunteer organization. We also invite you to like our Facebookpage.
Who is involved in the Fibrolamellar Registry?
A number of fibrolamellar patients, parents, siblings, spouses, friends, partners, researchers, nurses, physicians, epidemiologists and engineers worked together, over three years, to build the Fibrolamellar Registry:
Fibrolamellar Registry Board Members
Dr. Sandy Simon Chairman, President
Gail Trecosta Director, Vice President
Rachael Migler Executive Director, Treasurer
Michelle Desmond Director
Elana Simon Director
Julie Icari Secretary
Fibrolamellar Registry Scientific Advisory Board
Dr. Gadi Lalazar
Dr. Benjamin Farber
Dr. Irene Isabel Lim
Fibrolamellar Registry Survey Designers, Contributors, Advisors, Testers and Guides Team Leaders: Gail Trecosta, Rachael Migler
Social Media Director: Danielle Love
Dr. Mark Baerlocher, Society of Interventional Radiology
Dr. Benjamin Farber, Rockefeller University
Dr. William Hammond, Rockefeller University
Dr. Gadi Lalazar, Rockefeller University
Katherine Lambertson, Genetic Alliance
Will Lewis, St. Jude's Children's Research Hospital
Dr. Barbara Lyons, New Mexico State University
Anne-Marie McDonough, RN, MSN
Dr. James Saltsman, Rockefeller University
Dr. Jennifer Spink Strickland, Mesa Community College
Matthew Smith, Genetic Alliance
Sharon Terry, Genetic Alliance
Lisa Walters, FNP, St. Jude's Children's Research Hospital