Research Data/Biomaterialproben of DZNE's Clinical Research
Meeting schedule for data/biomaterials requests
In order to allow for a factual review by the data management and the biorepository, data/biomaterial requests must have been submitted to
klinische-studien(at)dzne.de at least 8 days prior to the meeting of the relevant panel. Unfortunately, late submissions cannot be considered for consultation.
| Panel | Responsibility |
| AG Biomaterial (Internal DZNE Expert Panel) | The AG Biomaterial makes recommendations to the Steering Committees and the Clinical Board after review of requests that include biomaterials. |
| Clinical Advisory Board (CAB) (Cross-site Advisory Committee for Clinical Research of the DZNE) | The CAB reviews cross-center and cross-cohort requests as well as requests from external researchers. |
| Clinical Executive Board (CEB) (Cross-site Management Committee for Clinical Research of the DZNE) | The CEB votes on the requests reviewed and proposed for approval by the CAB. |
| Steering Committee (SC) | The Steering Committees vote on cross-center applications of the respective study or cohort. |
| Meeting Schedule | (last update: 15-Oct-2024) | ||||
| 2024 | |||||
| July | August | September | |||
| > 01. 04. 11. > 12. 22. 25. | SC: DESCRIBE-FTD/ALS/PD (data requests only!) Clinical Advisory Board AG Biomaterial Clinical Executive Board DESCRIBE-PD (cancelled!) SC: DELCODE | 01. 05. 08. 08. 09. 12. 19. 22. | Clinical Advisory Board SC: DESCRIBE-FTD/ALS/PD AG Biomaterial Brain Bank Clinical Executive Board Ataxia DESCRIBE-PD (optional) SC: DELCODE | 02. 05. 12. 13. 19. 23. 26. | DESCRIBE-FTD/ALS/PSP Studyteams Clinical Advisory Board AG Biomaterial Clinical Executive Board Brain Bank DESCRIBE-PD SC: DELCODE |
| October | November | December | |||
| 07. 10. 28. 31. 31. | SC: DESCRIBE-FTD/ALS/PD AG Biomaterial DESCRIBE-PD (optional) Ataxia Brain Bank | > 04. 07. 12. 14. 15. 25. | DESCRIBE-FTD/ALS/PSP Studyteams (cancelled!) Clinical Advisory Board Brain Bank Committee AG Biomaterial Clinical Executive Board DESCRIBE-PD | 02. 05. 12. 12. 13. 23. | SC: DESCRIBE-FTD/ALS/PSP Clinical Advisory Board AG Biomaterial Brain Bank Clinical Executive Board DESCRIBE-PD |
Clinical Data Search Tool - CDST
The Clinical Data Search Tool - CDST provides the ability to retrieve information on existing data/materials from clinical research studies.
Request for Data and Biomaterial
The data/biomaterial request form as well as the regulations for use of the databases, data and samples of the Clinical Research of the DZNE can be found here...
Data Releases
Data Management regularly provides data exports of quality-assured research data. Below you will find an overview of the data exports of the individual cohorts:
| (last update: 01-Feb-2023 | |||||
| Cohorts | DESCRIBE-FTD DESCRIBE-ALS | DESCRIBE-Cognition DESCRIBE-Movement DESCRIBE-PSP | MiGAP | DELCODE | |
| Release Date | June 2023 | January 2023 | October 2023 | March 2023 | |