The Gilbert Family Foundation (GFF) is excited to announce the development of a database for neurofibromatosis type 1 (NF1) research tools in collaboration with Sage Bionetworks, a nonprofit health research organization based in Seattle, Washington. The database, paired with a web application that will enable user exploration and contribution, will include NF1-associated animal models, cell lines, antibodies, and genetic reagents and their associated characteristics and observational data. The database aims to support the development of a robust NF1 research toolkit while also lowering the barrier of entry to research for new-to-NF1 investigators. GFF and Sage intend the database to be used by a variety of stakeholders in the NF1 research community, including researchers, drug developers, and research funders.

Aligning with a key GFF tenet, GFF and Sage aim to design the database to positively impact the accessibility and quality of research tools and thus the state of NF1 research infrastructure. The database will classify each tool with metadata, including the NF1 phenotype, genetic alterations, and citations of previous use, increasing searchability for users. Data points such as contact information of the tool’s creator and vendor details will help database users source specific tools. Creators and previous users of the resources can also share valuable context through comments relating to pathology, behavior, neurochemical findings, issues encountered, usage recommendations, and general reviews. By ensuring the NF1 community can identify and access research tools that have been characterized by critical descriptors and documented use, the database will in turn support and accelerate the advancement of NF1 research.

GFF and Sage’s database will also serve as a valuable resource to investigators and other stakeholders previously unfamiliar with the NF1 research landscape. Those new-to-NF1 will be able to peruse through the list of NF1 tools to quickly gain an understanding of the current state of science, or explore new and relevant tools by searching with known attributes. This will also be useful for NF research funders to grasp existing gaps in available research tools. By consolidating purchasing and sourcing information for these tools as well, the database will save investigators time and effort and speed connections to the tools’ creators who may share their expertise.

The NF1 research tools database will provide the research community with the opportunity to share and explore information related to key research tools. If you are interested in learning more about the database or interested in participating in a design study to review and test a prototype version of the database, please reach out to nf-osi@sagebionetworks.org.


About the Gilbert Family Foundation

The Gilbert Family Foundation is a private nonprofit foundation founded by Jennifer and Dan Gilbert to accelerate a cure for NF1, a genetic disorder that causes tumors to grow on nerves anywhere in the body. The Gilbert Family Foundation supports groundbreaking, cutting-edge research in hopes of eradicating the disease. NF1 affects nearly three million people worldwide. The Foundation also supports philanthropic efforts in Detroit, Michigan.  For more information on the Gilbert Family Foundation, please visit gilbertfamilyfoundation.org.