Registry Working Party
Registry WP - Newsletter February 2019
by Mikko Seppänen
Dear ESID Members,
My warmest thanks to all who supported me in the election for ESID Registry Chair for the years 2018-22. I believe our mutual goal is to hone ESID registry into a tool that is useful, geographically comprehensive and widely, transparently and democratically accessible to our members.
A new chair means a new ESID Registry Steering Group (SG). I want to thank all the former SG members for their invaluable efforts. Former IPOPI chair Jose Drabwell should be especially recognized for her efforts during her many years of service.
In aiming towards ever better continuity, more secured funding, wider geographic coverage and continuous, rational further development, I have chosen to appoint into the present Registry SG the following ESID members:
- Nizar Mahlaoui, France, the former Chair who will act as Vice Chair during 2018-9/2020
- Markus Seidel, Austria, who will act as Vice Chair during 10/2020-2022
- Gerhard Kindle, Germany, Head of ESID Online Registry
- Fabio Candotti, Switzerland, ESID Treasurer
- Catharina Schuetz, Germany
- Vassilio Lougares, Italy
- Svetlana Sharapova, Belarus, ESID Junior Member
- Martine Pergent, IPOPI Chair, patient organization member
GDPR forces changes
General Data Protection Regulation (GDPR) was implemented in EU on 25th May 2018. Changes that have come along with it force us to reformat ESID Registry patient consents for new patients. The patients need to be informed of GDPR and of persons handling their data before consent. They also need to agree or disagree with sharing of information outside EU. GDPR stipulates that various issues concerning data protection are left for national/state legislations (Articles 4, 9h, 9i; Regulation 10). Locally, a data protection officer will also need to be named in the consent forms. Our new Registry SG will tackle these issues as soon as possible and then give recommendations on how to format patient consents accordingly, both on ESID Website as well as via e-mails to members.
With Best Wishes,
Registry Working Party Chair