Registry Working Party
Immune Deficiency and Dysregulation Activity (IDDA) score
The immune deficiency and dysregulation activity (IDDA) score is a tool to measure disease activity and burden in patients with immune dysregulation as assessed by the caring physician.
For the physician who actually saw the patient it should take only 5 minutes to fill out the score sheet. Documentarists might use a prefilled (pdf) IDDA score form from the caring physician to avoid leaving too many specific fields blank. The IDDA score enables interindividual (cross-sectional) comparisons and intraindividual (longitudinal) monitoring of patients with immune dysregulation as feature of their inborn error of immunity open for your own as well as for registry-wide observational research. If your research idea involves using the IDDA score data from other centers than your own, please propose your project to the ESID registry steering committee.
For questions please contact Dr. Markus Seidel directly or refer to the ESID registry.
Programming the IDDA module was in part supported by a one-time donation from Takeda (Austria).
The IDDA score was first introduced by Tesch et al., J Allergy Clin Immunol. 2020 May;145(5):1452-1463. doi: 10.1016/j.jaci.2019.12.896.
More information on this initiative will follow soon...
Currently we use IDDA (immune defienciency and dysregulation activity) score, Version 2.1 as of July 2020
This score has only meaning for patients with immune dysregulation and can be filled out voluntarily (not mandatory to complete for Level 1 documentation!).
As a facilitation for documenting (if you don't document directly into the Registry) you might want to use one of the following forms: