Registry Working Party
Definition and duties
The ESID Registry Steering Committee was founded in February 2012 in order to shape the further development of the ESID Online Database.
It was re-elected at the biennial meeting in Prague in 2014 and served together with the Registry Chairman Nizar Mahlaoui for his term of office, until October 2018.
With the election of a new Chair of the Registry Working Party in October 2018, a new steering group (SG) for the registry working party has been set up.
Composition of the ESID Registry Steering Group for the period 2018-2022:
a. The Chairperson (Chair) of the ESID Registry Working Party leads the SG.
b. The Chair is supported by a Vice Chair, a member of the SG. The Vice Chair is appointed by the Chair and serves in this position for two years.
c. The designated Vice Chair-in-waiting, also a member of the SG, takes the vice chair office at mid-term for the remaining two years.
d. Also, the following persons shall be members of the SG
- The treasurer of the ESID registry
- A representative from IPOPI
- Head of ESID Online Registry, who operates it
e. Upon application, up to three more SG members shall be appointed jointly by the Registry Chair and SG. In choosing, wide geographic, discipline (pediatric vs. adult), gender and age coverage will be emphasized. One of the three SG member positions will be reserved for a Junior Member.
Meetings of the steering group
1. The registry steering group convenes at least twice per year, either in person or via telephone or video conference. The meeting is scheduled by the Chairperson of the ESID registry. An agenda of the meetings is prepared by the Chairperson of the ESID registry. Between meetings, regular discussions by e-mail among SG members on questions arising from the tasks of the SG are encouraged.
Tasks of the steering group
The registry steering group has the following tasks:
(i) review and approval of new datasets
(ii) review of suggestions for changes and improvements in the database
(iii) approval of studies that wish to make use of the ESID registry for data acquisition
(iv) approval of studies that wish to make use of data gathered in the ESID registry
(v) establish and update rules for publications (authorships) using data from the registry
(vi) foster interaction with other international registries
(vi) decide about the ESID registry budget proposed once per year by the head of the registry
(vii) secure funding for the ESID registry core facility
- Chair Mikko Seppänen, Finland
- the former Chair Nizar Mahlaoui, France, who will act also as Vice Chair during 2018-9/2020
- Markus Seidel, Austria, who will act as Vice Chair during 10/2020-2022
- Head of ESID Online Registry Gerhard Kindle, Germany
- ESID Treasurer Fabio Candotti, Switzerland
- IPOPI Chair Martine Pergent (patient organization member)
- Vassilios Lougaris, Brescia, Italy
- Catharina Schütz, Dresden, Germany
- Svetlana Sharapova, Minsk, Belarus (junior member)