A study on the outcome of transplant for antibody deficiency and CVID in collaboration with EBMT Inborn Errors WP and ESID BMT and Clinical WP. Dear All, Please find details of this important study from Freiburg on the outcome of transplant for antibody deficiency and CVID. A letter explaining the study and the study questionnaire are attached below for download. It is likely that there are only a few patients with these conditions that have been transplanted but its important to ensure that as many as possible are captured by the study.Please address any queries regarding the study to Marta Rizzi marta.rizzi@uniklinik-freiburg.de Kind regardsBobby GasparChairperson ESID WP BMT StemPAD_sketch_V1_2 StemPAD questionnair V1.2
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A call for WHIM patients
Dear ESID member, The syndrome of warts, hypogammaglobulinemia, infections and myelokathexis (WHIM) is a rare primary immunodeficiency associated with a marked neutropenia and lymphopenia that transmits usually as an autosomal dominant disease and ma…
BCG infection in SCID patients Interest Group
Post-vaccinal BCG infection in SCID patients/ International survey Diagnosis and treatment policies
Call for participation! NEMO study
Dear colleagues,
We would like to initiate a multi-institutional survey of the CLINICAL PHENOTYPE of NEMO-deficient patients. We would like to invite you, as a physician caring for such patients, to take part in this survey.
Call for participation! STAT3, Dock8, or Tyk2 genes
Dear ESID colleague,
We do CPA-certified STAT3 mutation detection at the Royal Free Hospital in London.
ESID Registry – Newsletter January 2023
Prof. Markus G. Seidel In this first newsletter after the 2022 ESID meeting I would like to thank all supporters and participants of the ESID registry (ESID-R) for their valuable contributions! Around 15 ongoing or recently completed research projects and the creation, curation, and expansion of the immense data pool for future studies would not be possible without you! Together with lawyers and the IT-team we are currently working hard on necessary updates of the legal and technical framework. Call for ESID-R steering committee members: If you want to actively shape the registry, contribute, lead a task force, please apply (six persons, see below)! To solve bottlenecks in the pipeline of YOUR planned ESID-R projects, we will appoint a new administrative help and move the platform to a decentrally programmable platform (RedCap®) step-by-step (new projects first, followed by new patients). […]
ESID Registry – Newsletter August 2020
by Mikko Seppänen
ESID Registry – Newsletter December 2019
by Mikko Seppänen
ESID Registry – Newsletter August 2019
by Mikko Seppänen
Registry WP – Newsletter February 2019
by Mikko Seppänen