Registry Working Party
Registry WP - Newsletter August 2018
by Nizar Mahlaoui
I am happy to share with you exciting news about the Registry:
1. We are launching the new Reporting Tool (see factsheet below for the url and highlights).
2. We have launched another round of ESID Registry Grants to financially support documenting centres for a 1-year period for up to 50,000 euros!
3. We plan to start or enhance the documentation of patients from Sweden, Spain, Italy, Russia and Israel.
4. We are working along with RITA and IPOPI on how to implement the European General Data Protection Rules (GDPR) in the ESID Registry frame.
5. During the Steering Committee face to face meeting, we decided to improve Level 1 documentation with the implementation of new fields regarding morbidities and treatments:
2. Biological agents,
3. Solid organ transplantation.
6. We have completed the considerable task of producing clinical diagnostic criteria in order to improve the quality of documentation. As per June 2018, all PID diagnoses have definitions for clinical diagnosis and registration. Please refer to: htpps://www.esid.org/Working-Parties/Registry/Diagnosis_Criteria.
7. Although finances of the Registry are secure until the end of 2019, funding remains an important issue.
8. Congratulations to all authors!
a. Almost 30 publications since Oct. 2014 covering
i. a large array of PIDD (antibody deficiency, CID, CGD…),
ii. ways to diagnosis,
iv. recognition and awareness,
v. natural course of disease,
b. Several publications are in preparation or in revision.
9. ESID registry features during the next Biennial ESID meeting in Lisbon:
a. 13 abstracts based on or related to the ESID registry were submitted.
Congratulations to all authors!
b. Mark your calendar to attend the Registry WP session on Thu Oct. 25th,
c. During the next Biennial meeting, a new chair will be elected.
Whishing him/her the best for the next 4 years.
d. Join the next Registry Steering Committee!
Thank you to all contributors to the ESID Registry.
It has been a great honor to serve the ESID registry, the ESID society and the PID community.
Hope you all have a great summer season.
ESID Registry WP Chairman,
on behalf of the ESID Registry WP Steering Committee Elect
(Bodo Grimbacher, Germany - Isabella Quinti, Italy - Matthew Buckland, The United Kingdom - Markus Seidel, Austria - Joris van Montfrans, The Netherlands) and Mrs. Jose Drabwell, IPOPI Chairperson, along with the members of the IT team in Freiburg University (Gerhard Kindle, Stephan Rusch and Raphael Scheible).