In the past years, considerable amounts of data have been generated creating new opportunities for evidence collection in the area of health to find better and more effective therapies for severe and life-threatening diseases. There is a growing international trend to support data-sharing initiatives in order to improve science and transparency.
Rare diseases pose a major challenge to patients and families, to physicians and researchers, and to society as a whole. A disease is considered rare when not more than one person per 2,000 people is affected.
Data sharing presents a new and promising opportunity for research in the field of rare diseases.
This workshop is dedicated to present the opportunities and potential pitfalls of rare diseases research and big data with a keynote speech and a panel discussion in German on the first day, followed by individual presentations on the second day.
This meeting is a cooperation between the Medical University of Vienna, the UNESCO Chair on Bioethics at the Medical University of Vienna and the Ludwig Boltzmann Institute for Rare and Undiagnosed Diseases (LBI-RUD) in Vienna/Austria (www.rare-diseases.at).