This EuroMyositis database has been created in order to obtain uniform, longitudinal data over adult and juvenile myositis cases in order to achieve increased knowledge on disease course and prognosis of myositis. In addition, this registry could be used as a tool in the clinic to assess patients.
The specific purpose of the registry is:
i) first hand to include basic data to be able to do research on genetics, clinical and laboratory data and serology as well as muscle biopsy data.
ii) With consecutive data on the patients, there will be possibilities to do research for finding out prognostic markers by using assessments of disease activity and damage as outcome measures.”
The EuroMyositis registry was developed within the integrated European FP6 AutoCure project and led to a creation of the basic database. Starting from summer 2010, further development and support for 5 years will be through EuMyoNet/MyoNet
The database is administered by company ZiteLab Aps represented by Niels Steen Krogh.
How to become a user
See process on the link for approval process: EuroMyositis registry (https://euromyositis.eu)
Contact information to EuroMyositis registry
Dr. Hector Chinoy, M.D., Ph.D.
The University of Manchester, 2nd floor, Stopford Building
Oxford Road, Manchester, M13 9PT, UK