Subproject 6 consists of four major work packages.

1. Creation of a common data platform, which is fed by several register/intervention study databases.  (INFORM, MASTER, the SoTiSaR registry of the CWS, the international EuroEwing registry and the EuroEwing Phase 3 study of the Cooperative Ewing Sarcoma Study Group [CESS], SarcBOP and the cancer registries in Dresden and Essen);

2. Provision of an overview of HEROES-AYA patients for subprojects 1-5, providing clinical data and an overview of which biomaterials are available, including clinical and biomaterial information;

3. Development of new clinical studies from the results of subprojects 1-5. The clinical studies are designed according to an innovative study design, the so-called Rolling-2-Design. This enables studies to be set up and conducted in a short period of time, which is very advantageous for research into new drugs for rare diseases.

4. Creation of a harmonized database and platform.

Main objectives:

• Implementation of the integrative data platform for HEROES-AYA

• Provision of an overview of HEROES-AYA patients, including clinical data and available biomaterials

• Development of innovative interventional studies with special consideration of the AYA patient population

PI: Uta Dirksen (UD), University Hospital Essen and WTZ, Hufelandstr. 55, Essen, Germany
Co-PI: Richard F. Schlenk (RS), Heidelberg University Hospital, DKFZ, and NCT Heidelberg, Im Neuenheimer Feld 130/3, Heidelberg