BPAN sufferers and their families are invited to post health information about the disease on the new, secure RARE-X platform. The purpose of this database is to collect information about rare diseases such as BPAN and make it available for research. By linking data sets from different diseases, researchers can gain new insights that can be of decisive benefit in the development of therapies.
Launched on 6 August, the decentralized online data platform RARE-X-BPAN aims to promote data sharing and thus accelerate the dissemination of information and the pace of BPAN research. The data is collected and stored in a decentralized manner using standardized questions and is only brought together for analysis.
The platform is free for families to use. Importantly, it keeps health information confidential by only providing anonymized data, i.e. 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 wishing to participate can access the website at: https://bpan.rare-x.org
A translation is planned 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 that deal exclusively with BPAN: BPAN Warriors in the USA, BPAN France and Autour du BPAN, both in France) have made a start with RARE-X, a newly founded non-profit organization. Other rare diseases will gradually be included.
Additional information on the RARE-X database, its purpose and how it works is summarized in an online presentation, which you can access at:
https://www.youtube.com/watch?v=_QOZsX1SKOw The English-language presentation has subtitles that can be automatically translated into German.
Further information on the non-profit organization RARE-X can be found at: https://rare-x.org
Original article by Patricia Wood, translated and revised by Markus Nielbock