The study has been approved by ESID.
Proposed by: Bodo Grimbacher and Cliodhna Murray, Freiburg
The GAIN2_ESID-level-2 dataset has been developed for the documentation of patients with both, immunodeficiency and immune dysregulation, i.e. autoimmuniy and/or autoinflammation.
Hence, the GAIN2_ESID-level-2 dataset shall facilitate the publication of patient cohorts with multi-organ autoimmunity and autoinflammation. This dataset is now available on the ESID-Castor database.
As first cohorts, we propose to collect data on all patients with pathogenic mutations in NFKB1 (coordinated by Bodo Grimbacher and Cliodhna Murray, Freiburg) or NFKB2 (coordinated by Christian Klemann). Ethics approval has been obtained by the coordinating centres.
Please contact Dr. Cliodhna Murray at <cliodhna.murray@uniklinik-freiburg.de> or Prof. Klemann at <Christian.Klemann@medizin.uni-leipzig.de> for further information.
Important Note: Users will note that the GAIN2 substudy was implemented „outside“ of the ESID registry in their Castor dashboard. The reason for that is that it was conceptualised as an optional level 2 registry, which does not apply to all patients registered in the ESID registry, nor does it „appear“ upon entering a certain diagnosis like most other substudies, but instead, it is designed as an open data collection for genetic autoimmune diseases for future research.
