The IDDA score has already been available as optional module (tab) in the level 1 for your own use at the initial and follow up patient entries and is designed for all IEI with immune dysregulation. Now, I am inviting your active contribution to a prospective study until end of 2023 (prolongation possible), aiming to implement a powerful tool for assessment and monitoring of disease activity and phenotype patterns!
M. Seidel, March 2022
Extention to Level 1 for patients with ILD.
Currently under Revision (12/2023) by Study team.
Risk factors for mortality in cartilage-hair hypoplasia
Data has been extracted and provided to the study team. Analysis completed and manuscript submitted (12/2023)
New centers should fill in the Agreement between the center and ESID
and new users of the ESID registry should complete an Application Form to receive user access.
A concise guide to the new ESID Registry!
This list gives an overview on the diseases in the Registry and available genes for each disease. Please, have also a look in the menu on the left at ESID Diagnosis criteria.
This section contains a description of the three Levels and (technical) documents on the ESID Registry; in particular, the complete Level 1 dataset with field definitions and driving questions as well as the Level 2 dataset ( unPAD study).
This section provides questionnaires that can be applied to patients and physicians to collect the necessary data items for the new ESID Registry.
The questionnaires correspond to the level 1 of the new ESID Registry.
For explanation of the different fields of the questionnaire, please check the corresponding datasets.
Questionnaires for level 2 ( unPAD study) are preliminary for the time being and only in English available. Please refer to the dataset, too.
2023: Gastrointestinal complications in CVID: from pathology to management Date: Wednesday, 13 December 2023 (17:30 CET/ 16:30 GMT) Please register in advance of the session here. Topic: Gastrointestinal complications in CVID: from pathology to management Description: This session will be hosted by Boris Karanović (Chair of the ESID PID Care in Development Working Party) and Klaus Warnatz (Department of Rheumatology and Clinical Immunology at the University of Freiburg, Germany). During this session of the Grand Rounds, we will explore the topic, “Gastrointestinal complications in CVID: from pathology to management.”The programme for this session is as follows: Boris Karanović – presentation of a difficult to treat clinical case of CVID enteropathy. Klaus Warnatz – Interferon-driven immune dysregulation and Norovirus infection in CVID. Helen Leavis: Microbial dysbiosis in CVID. Silje Fjellgård Jørgensen: Metabolic disturbances in CVID: potential relationship […]
November 2023: Management of CGD in the 21st Century Date: Thursday, 16 November 2023 (17:00 CET/ 16:00 GMT) Please click here to view the webinar video. Topic: The Management of CGD in the 21st Century. Description: This session will be hosted by Dr. Andrew Gennery. During this session of the Grand Rounds, we will explore the topic, “Management of CGD in the 21st Century.” The schedule of presentations is as follows: Andrew Gennery: Introduction David Lowe: Medical Management of CGD (20 minutes) Mary Slatter: Haematopoietic Stem Cell Transplantation for Chronic Granulomatous Disease (20 minutes) Claire Booth: Gene Therapy for CGD (20 minutes) Panel discussion Speakers: Prof. Andrew Gennery (moderator) Honorary Consultant in Paediatric Immunology and Haematopoietic Stem Cell Transplantation at the Faculty of Medical Sciences, Newcastle University (United Kingdom). Dr. David Lowe (speaker) Consultant […]
