FRIENDS Data Project

About the Project

What is FRIENDS?

The FRIENDS (Fanconi Research Initiative for Education, Networking, and Data Sharing) Data Project is an initiative led by the Fanconi Cancer Foundation to advance research and discovery in FA. This rare genetic disorder, caused by mutations in any of the known 23 FA genes including BRCA1 and BRCA2, predisposes individuals to cancer, bone marrow failure, and other systemic issues. FRIENDS aims to combine and share data across the global FA research community to enhance our understanding and treatment of this disease.

Why Does it Matter?

FA is a rare disease, and data on it is often siloed, making comprehensive research challenging. By creating a collaborative data-sharing platform, FRIENDS seeks to break down these silos and facilitate research on critical priorities such as bone marrow failure, cancer, and genetics. Additional research areas include breakage analysis and diagnosis, community engagement, demographics, developmental abnormalities, dietary history, environmental exposures, family history, Fanconi Associated Neurological Syndrome (FANS), fertility, and psychosocial research. Ultimately, this project aims to improve the care and outcomes for individuals with FA.

Who is Involved?

The FRIENDS Data Project is a collaborative effort involving FA experts, the D4CG governance and data standards teams, and the University of Chicago. This collective includes researchers, clinicians, and institutions dedicated to advancing FA research and improving patient care.

How Can Researchers Get Involved?

Researchers are encouraged to participate in various capacities:

Governance Participation: FA experts will collaborate with our partners at Data for the Common Good (D4CG) through governance and data standards teams to form the FA planning committee. This committee will make strategic decisions about data governance through monthly meetings and will establish the FRIENDS consortium through a signed Memorandum of Understanding (MOU). They will also manage the regulatory requirements for data contributors, resulting in Data Contributor Agreements (DCAs) executed by the University of Chicago.
Data Dictionary Participation: In collaboration with the data standards team, FA experts will develop a universal FA data model and harmonize existing disease-specific data dictionaries to this model. This involves monthly data dictionary working group meetings and harmonizing available data before placing it in the Pediatric Cancer Data Commons data portal.

To submit your data elements for inclusion in the FRIENDS data dictionary, please contact Laura Hefner, FCF Research Program Manager, at laura@fanconi.org.

Take It From An Expert

It's All About Making Friends!

“Upon entering the world of rare diseases, I encountered a profound quote: ‘If you work with common diseases, you have to compete. If you work with rare diseases, you have to make friends.’

More than two decades later, this sentiment gets even more real to me than ever. Thanks to the remarkable initiative by FCF, a collaboration with D4CG has been launched, aiming to register as many individuals with FA worldwide as possible. In this very early stage, it is crucial to identify the most vital information to collect and the most pressing research topics to address, in order to enhance both the care and understanding of FA—a passion of mine. The history of FA illustrates the significant impact of international collaboration. As our patients live longer, new challenges emerge on the horizon that can only be addressed collectively. Thus, it is more than logical to name this initiative FRIENDS. I hope you become a friend as well.”

Eunike Velleuer-Carlberg, MD
University of Düsseldorf

About Data for the Common Good and the Pediatric Data Commons

The Pediatric Cancer Data Commons (PCDC) builds communities and harnesses data from around the world to create a single unified platform for cancer research across the lifetime of a patient.

Bringing together hundreds of international collaborators, more than a dozen diagnosis-specific PCDC consortia are collecting and harmonizing data from across more than forty countries. The PCDC is growing to include data for pediatric, AYA, and adult patients with many types of cancer, as well as cancer predisposition syndromes. The PCDC Data Portal provides a unified platform for researchers to explore and access data.

The PCDC is a project of Data for the Common Good (D4CG). Headquartered at the University of Chicago, D4CG is dedicated to building communities, platforms, and ecosystems that maximize the potential of data to drive discovery and improve human health.

Catalyst for Change

Thank You to the Joel Walker Fund

Our sincere thank you to the Joel Walker Fund for supporting the FRIENDS project. Joel Walker, an adult with FA, passed away from complications of head and neck cancer in November 2016. Joel was a talented student, good at sports, sociable and happy. Research into treatment for FA was a high priority for Joel, along with the hope that he could help others, so he left a large part of his estate to the Fanconi Cancer Foundation. In honor of their son, Joel’s parents, Nigel and Ann Walker, created the Joel Walker Fund.

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