RARE-X: A new, secure database for exchanging BPAN health data

BPAN sufferers and their relatives are invited to post health information about the disease on the new, secure platform RARE-X. The purpose of this database is to collect information about rare diseases such as BPAN and make it available for research. By linking datasets from different diseases, researchers can gain new insights that can be of crucial use in the development of therapies.

Launched on 6 August, the 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 decentralised manner by means of standardised questions and is only brought together for analysis.

The platform is free to use for families. It is important that it keeps health information confidential by only providing anonymized data, i.e. 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 accessible to English-speaking BPAN families. Those who wish to participate can access the website at: https://bpan.rare-x.org
A translation is planned for next year.

Six patient organizations representing people with BPAN (NBIA Disorders Association in the U.S., Hoffnungsbaum e.V. in Germany, Stichting Ijzersterk in the Netherlands and three organisations dedicated exclusively to 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 organisation. Other rare diseases are gradually being included.

Additional information about the RARE-X database, what it does and how it works is summarized in an online lecture, which you can reach at:
https://www.youtube.com/watch?v=_QOZsX1SKOw The lecture in English is provided with subtitles, which can be automatically translated into German.

For more information about the non-profit organization RARE-X, please visit: https://rare-x.org

Original article by Patricia Wood, translated and revised by Markus Nielbock