BPAN sufferers and their families are invited to post health information about the disease on the new, secure RARE-X platform. This database is designed to collect information about rare diseases like BPAN and make it available to researchers. By linking datasets from different diseases, researchers can gain new insights that can be of critical use in developing therapies.
The RARE-X-BPAN online data platform, which was released on August 6 and is organized in a decentralized manner, is designed to promote data sharing to accelerate the dissemination of information and the pace of BPAN research. Data will be collected and stored in a decentralized manner through standardized questions and pooled only for analysis.
Use of the platform is free of charge for families. Importantly, it keeps health information confidential by providing only anonymized data, meaning it is not linked to individual names. Individuals and families affected by beta-propeller protein-associated neurodegeneration (BPAN) decide for themselves whether to allow or deny access to their personal health data for a research project.
The platform is currently open to English-speaking BPAN families. Those who wish to participate can access the website at: https://bpan.rare-x.org
A translation is targeted for the coming year.
Six patient organizations representing people with BPAN (NBIA Disorders Association in the USA, Hoffnungsbaum e. V. in Germany, Stichting Ijzersterk in the Netherlands, and three organizations dedicated exclusively to BPAN: BPAN Warriors in the U.S., BPAN France, and Autour du BPAN, both in France) have begun with RARE-X, a newly formed nonprofit organization. Other rare diseases will gradually be included.
Additional information about the RARE-X database, what its mission is, and how it works is summarized in an online lecture that can be accessed at:
https://www.youtube.com/watch?v=_QOZsX1SKOw The English-language lecture is provided with subtitles that can be automatically translated into German.
For more information on the RARE-X nonprofit organization, visit: https://rare-x.org
Original article by Patricia Wood, translated and revised by Markus Nielbock