EuRR-Bone is launched!

The registry EuRR-Bone was launched this week, and will cover rare bone and mineral conditions the European Reference Network on Rare Endocrine Conditions (Endo-ERN) as well as the European Reference Network on Rare Bone Disorders (ERN BOND). EuRR-Bone will be of service to all patients, health care professionals and researchers involved in the care of people with rare bone and mineral conditions.

OIFE attended EURORDIS webinar on data strategy for the ERNs

Having more knowledge on registries and data sharing is therefore very important for the OIFE these days. Today we were represented at a webinar called “A data strategy for the European Reference Networks” (ERNs), which included the following talks:

  • EURORDIS proposals to develop a data strategy for ERNs
  • The European Health Data Space
  • ERNs data needs, progress until today and challenges around registries, data collection and data sharing across ERNs.
  • The perspective of ERNs hospital managers on data needs, opportunities and challenges.

EURORDIS publication on data strategy

The webinar was connected to a new publication from EURORDIS called “No time to lose: Building a data strategy for the European Reference Networks“. The aim of the publication is to inform the debate on a data strategy for the ERNs. The paper outlines EURORDIS’ proposal to co-create a comprehensive ERN data strategy that matches the ambition of the Networks, enabling them to address some of the most pressing public health needs of people living with a rare disease or complex condition.

The ERNs represent a unique opportunity for the innovative use of health data across borders to improve the lives of people living with a rare disease. At the same time, the large majority of people living with a rare disease are willing to share their health data to advance care and research, as long as this is done in a secure manner and they remain in control of the data sharing process. An integral data strategy should therefore be one of the building blocks of an ERN structure that aims to improve the life of people living with a rare disease through knowledge and data sharing across countries and diseases.

See also this useful glossary to understand more about data sharing and patient data.