Despite many examples of excellent practice, rare disease research is still mainly fragmented by data type and by disease. Individual efforts have little interoperability and almost no systematic connection of detailed clinical information with genetic information, biomaterial availability or research/trial datasets. By developing robust mechanisms and standards for linking and exploiting these data, RD-Connect will develop a critical mass for harmonisation and provide a strong impetus for a global "trial-ready" infrastructure ready to support the IRDiRC goals for diagnostics and therapies for rare disease. During this tutorial, participants will gain a greater appreciation of the aims and objectives of RD-Connect and how different users e.g. patients/patient representatives, researchers and industry can best utilise the platform.
Who Should Attend
This tutorial will be of interest to all those working in the rare disease field who would like to learn more about the RD-Connect platform, in particular clinicians, researchers, patient advocacy groups and industry.
Gain a greater understanding of the aims and objectives of the RD-Connect platform.
Learn how the RD-Connect platform can be utilised by different groups of individuals.