About the Fibrolamellar Registry

Welcome!

The Fibrolamellar Registry is run by patients with a rare pediatric/ young adult liver cancer called fibrolamellar hepatocellular carcinoma, and their loved ones. 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 Registry first launched in October of 2016. Our survey is approved as a scientific study by the Genetic Alliance Institutional Review Board and we belong to the REDCap Consortium, which is supported by the National Institutes of Health. We have been awarded grants by the Rally Foundation for Childhood Cancer Research and others, and have been part of the National Patient-Centered Clinical Research Network (PCORNET) as members of the Genetic Alliance. We are partners with the Fibrolamellar Tissue Repository at Rockefeller University, which stores fibrolamellar tissue samples, making the Registry data twice as useful. 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. In fact, several research studies are already underway with oncologists and researchers using the data our community has shared.

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?

Taking the survey is the best way to help. You can also volunteer in several ways. For example, you can also donate funds as we are an all-volunteer organization. You can donate tumor tissue or blood to our research partners at Rockefeller University, which is also looking for volunteers in the lab. Numerous fibrolamellar patients, from high school age up, have enjoyed doing research in this lab.

We also invite you to like our Facebook page.

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
  • Rachael Migler Executive Director
  • Julie Pickard Secretary
  • Lisa Walters Treasurer
  • Elana Simon Director
  • Carol Hendrix Director
  • Siobhan Lett Social Media Manager

Fibrolamellar Registry Scientific Advisory Board

  • Dr. Benjamin Farber, University of Iowa
  • Dr. Ronald Lahasky, Abbeville, Louisiana
  • Dr. Gadi Lalazar, Rockefeller University
  • Dr. Barbara Lyons, New Mexico State University
  • Dr. Michael Torbenson, Mayo Clinic

Fibrolamellar Registry Survey Designers, Contributors, Advisors, Testers and Guides (past and present)

  • Gail Trecosta (Team Leader)
  • Rachael Migler (Team Leader)
  • Dr. Mark Baerlocher, Society of Interventional Radiology
  • Sarah Crook
  • Michelle Desmond
  • Dr. Benjamin Farber, University of Iowa
  • 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 
  • Julie Pickard
  • Dr. James Saltsman, Rockefeller University
  • Dr. Jennifer Spink Strickland, Mesa Community College
  • Matthew Smith, Genetic Alliance
  • Chris Sweeney
  • Sharon Terry, Genetic Alliance
  • Lisa Walters, FNP, St. Jude’s Children’s Research Hospital
  • Laura Zale