RARE-X, Global Genes to help collect data on rare disease patients
In their ongoing 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 it. information.
“Patient data is perhaps the most valuable asset that rare disease communities can harness to generate research interest and drive drug development in their area of disease,” said Craig Martin, CEO of Global Genes, in a press release.
RARE-X is a non-profit organization that collects, structures and shares patient data with the aim of accelerating the search 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.
As part of its collaboration with Global Genes, RARE-X will bring its expertise to create data collection portals for interested patient communities, allowing them to securely collect patient data and share it with researchers from across the country. whole world.
The organization will also provide training and education on how to use these portals, and provide ongoing support services to help patient communities share their data with researchers around the world.
It is worth noting that patients and undiagnosed individuals will also be able to collect and share their data to advance research, as the partnership will also create an entry point for these patients.
“By working with RARE-X, we will enable rare disease communities to collect, use and share their data to drive advances towards treatments,” said Martin.
Global Genes is one of the largest patient communities in existence and dedicated to improving the lives of more than 400 million people around the world living with a rare disease. It aims to bring different perspectives of patients to the table and improve equity and inclusion.
Its RARE Foundation Alliance is a coalition that includes more than 800 rare disease organizations around the world 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.
Patients and participating 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 will enable many other patient groups to benefit from faster research advances,” said Charlene Son Rigby, CEO of RARE-X.