The study has been approved by ESID.
Proposed by: Prof. Dr. Markus Seidel
Immune modifying pharmacological therapy such as antiinflammatory
and immunosuppressive drugs are being used in a variety of IEI/PID with hyperinflammation or autoimmunity.
There is an increasing availability of compounds specifically targeting an aberrantly over-activated or inhibited disease causing pathway. Furthermore, these drugs are continuously used and sometimes tested systematically in phenotype-related clinical settings, where a targeted drug is unavailable.
Some very efficient therapies are even counterintuitive, and many may be difficult to be medically justified in low-resource settings. The ESID registry has collected information about the use of immune modifying and immunosuppressant drugs in its level 1 baseline data since late 2018. With the transition to the new platform on castor, additional data fields on organ involvement were made available. These data have not been analysed systematically but have the potential to be interesting
for many stakeholders.
