Clinical Working Party
Clinical WP - Newsletter April 2019
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by Andrew Gennery
Clinical Working Party
The clinical guidelines writing continues to make progress – please contact me if you wish to be involved.
We are publishing these as ESID and ERN-RITA endorsed guidelines, available on the ESID website.
The Complement Disorders guidelines have been submitted for publication.
Current and emerging projects:
- Consensus statement on diagnosis and management of GLILD in CVID (Klaus Warnatz: )
- Consensus statement on diagnosis and management of CGD (Siobhan Burns + Andy Gennery: ) – writing in progress
- Vaccination of the immunocompromised (Filomeen Haerynck + Andy Gennery: Filomeen.Haerynck@uzgent.be ) – writing committee convened, draft in preparation
- Thymic Disorders (Aisling Flinn, Graham Davies, Andy Gennery)
Additional upcoming topics include:
Markus Seidel is leading a project on outcome of patients with LRBA deficiency – both those who have been transplanted and those who have not. Data were presented at the 45th European Blood and Marrow Transplant meeting in Frankfurt, Germany in March.
– contact Markus if you have data you wish to include: .
A further project is in progress in conjunction with the IEWP and Registry WP to construct a data set for follow up of patients with idiopathic CD4+ lymphocytopenia, detected by newborn screening.
The Clinical Working Party Steering Committee
- Dr. Andy Gennery – UK (Chair)
- Dr. Stephen Jolles – UK (Secretary)
- Professor Raffaele Badolato – Italy
- Professor Klaus Warnatz - Germany
- Dr. Fabian Hauck - Germany
- Professor Anna Sediva –Czech Republic
- Professor Carlo Agostini – Italy
- Dr. Despina Moshous - France
- Professor Ewa Bernatowska - Poland
- Professor Tadej Avcin - Slovenia
- Dr. Siobhan Burns – UK
- Professor Pere Soler Palacin - Spain
- Dr. Filomeen Haerynck – Belgium
- Professor Luigi Notarangelo – (CIS representative)
- Professor Antonio Condino – (LASID representative)
- Mrs Jose Drabwell – (IPOPI representative)
- Ms Carla Duff – (INGID representative)
How to participate
The clinical WP meets during the biennial ESID meetings. Any ESID member clinician can participate and propose trials to the Chair of the clinical WP to be placed on the ESID website. Additionally, we will be running stand alone focused meetings to further the aims of the CWP and ESID.