Registry Working Party
ESID APDS Registry - An introduction
In the last year, a first "level 3" project in the ESID registry has been developed.
This is an industry-supported registry on patients with activated PI3K delta syndrome (APDS).
The goal of the project is to:
- Describe the natural history of APDS
- Develop a risk model for APDS patients (identification of markers predicting disease severity)
- Assess the impact of treatment strategies for APDS
- Facilitate access for patients to studies with PI3K delta inhibitors
The APDS "level 3" registry project has been developed by Alison Condliffe, Sven Kracker and Stephan Ehl in close coordination with the ESID board and the ESID registry working party. The project is sponsored by 3 independent industry partners. ESID stays in full control of the registry data, but industry partners receive regular data exports to identify patients meeting inclusion criteria for their studies. They have the right to contact centers and ask them to offer their patients inclusion into a study protocol. The treating physician is free to decide if and which study he offers to his patients.
Industry support allows to provide compensation for retrospective patient documentation (100 Euro), 6-monthly follow-up documentation (50 Euro per year) and HSCT documentation (100 Euro).
A project plan has been elaborated, ESID consent forms have been evaluated to cover this project, center contracts between ESID and the documenting centers to receive compensation have been prepared.
We are excited to open this project today.You can find all information on the ESID registry website: http://esid.org/Working-Parties/Registry/Studies/APDS-Registry
Please do not hesitate to contact us if there are any questions related to this project by Phone: +49-761-270-34450 or
ESID Registry Working Party