RARE-X, Global Genes to Help Collect Rare Disease Patient Data

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by Shayna Korol |

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In their continued efforts to improve health equity for people with rare diseases, Global Genes and RARE-X have joined forces to help advocacy groups collect patient data and make the most of that information.

“Patient data is perhaps the most valuable asset rare disease communities can leverage to generate research interest and spur drug development in their condition area,” Craig Martin, CEO of Global Genes, said in a press release.

RARE-X is a nonprofit that gathers, structures, and shares patient data with the goal of accelerating research for treatments and cures for rare diseases. Its RARE-X Data Collection Platform uses technology and models that have been proven to work at different scales.

Under its collaboration with Global Genes, RARE-X will provide its expertise to create data-collection portals for interested patient communities, enabling them to safely gather patient data and share it with researchers worldwide.

The organization also will offer training and education on how to use these portals, and provide ongoing support services to help patient communities share their data with researchers across the globe.

Of note, undiagnosed patients and individuals also will be able to collect and share their data to advance research, as the partnership will also create an entry point for those patients.

“Working with RARE-X, we’ll make it possible for rare disease communities to collect, utilize, and share their data to generate progress toward treatments,” Martin said.

Global Genes is one of the largest patient communities that exists, and is dedicated to improving the lives of the more than 400 million people worldwide who live with a rare disease. It aims to bring different patient perspectives to the table, and to improve equity and inclusion.

Its RARE Foundation Alliance is a coalition that includes upward of 800 rare disease organizations globally and represents more than 1,000 rare diseases. Members of this alliance can start signing up for RARE-X’s data collection initiative in early 2022.

Participating patients and organizations will have free access to the RARE-X data collection platform.

“By adding and integrating RARE-X’s data-collection capabilities into Global Genes’ offering to its network, we’ll make it possible for many more patient groups to benefit from faster research breakthroughs,” said Charlene Son Rigby, CEO of RARE-X.