For Researchers
Clinical Research Platform - CRP
The Clinical Research Platform at the Bonn site supports and coordinates the DZNE's multi-site clinical studies with the help of its task areas of project management, data management, quality assurance, quality management, biobanking, trial design & statistics, and central contact management.
Databases of Clinical Research
Here you'll find the Databases of DZNE's Clinical Research.
Support: In case of questions or issues, please contact the data management of the clinical research platform: data-management-kf(at)dzne.de.
Requirements: The request form for database access, the declaration of commitment and the regulations for use of Clinical Research databases, data and biomaterial samples of the DZNE can be downloaded here:
- Request for access to the databases of the clinical research (German only)
- Declaration of commitment by users of the clinical databases (German only)
- Regulations for use of Clinical Research databases, data and biomaterials of the DZNE
The request form can be sent either by mail or e-mail, the declaration of commitment by mail only to the rights management of the clinical research:
Deutsches Zentrum für Neurodegenerativer Erkrankungen e.V.
Klinische Forschungsplattform - Rechtemanagement
Venusberg-Campus 1/99
D-53127 Bonn
zentrales-rechtemanagement-DB(at)dzne.de
Important note: In case PDF forms are not displayed properly using Firefox, e.g. without editable form fields, follow these instructions and choose "Open with Adobe Acrobat Reader": Disable the built in pdf-viewer and use another viewer
Clinical Data Search Tool - CDST
The Clinical Data Search Tool - CDST offers the opportunity to retrieve information on available data/materials from clinical research studies.
The CDST provides purely qualitative information (no number of available datasets) such as
- Forms (= examinations such as tests, scales, imaging, biomaterial, etc.) and
- Parameters (= Variables/Items),
for which results are available in the clinical research databases for a particular study.
For each study
- individual forms completely (> Formular drucken) as well as
- parameters from several forms (> ausgewählte Items: … > Auswahl drucken)
can be saved as a PDF file and, if necessary, attached to the Request for Data and Biomaterial.
Please note that this does not replace the request, it can serve only as a supplement.
Request for Data and Biomaterial / Biobank Report
The data/biomaterial request form and the regulations for use of Clinical Research databases, data and biomaterial can be downloaded here:
- Data/Biomaterial Request Form
- Regulations for use of Clinical Research databases, data and biomaterials of the DZNE
Please, send the request form to klinische-studien(at)dzne.de.
- Report of DZNE's Clinical Research Biobank (German only)
Important note: In case PDF forms are not displayed properly using Firefox, e.g. without editable form fields, follow these instructions and choose "Open with Adobe Acrobat Reader": Disable the built in pdf-viewer and use another viewer
Request consultation service
To ensure that your request is processed smoothly and that your needs and our requirements for the targeted handling of your request are met in the best possible way, our consulting team is at your disposal. We will help you prepare your application in order to
- clarify any potential questions or uncertainties in advance,
- ensure that your requirements and objectives are fully understood,
- support you in selecting the appropriate data and resources,
- facilitate and accelerate the process of your request.
We are convinced that a prior consultation will help to ensure an efficient and successful collaboration that will benefit both you and our team.
Please arrange a consultation at Data.ManagementKF@dzne.de.
Clinical Data Search Tool - CDST
Please also use the Clinical Data Search Tool - CDST to specify your request or to clarify in advance which parameters/biomaterial samples/MRT sequences/QA information/analysis results are available for the individual studies.
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. |
| Sitzungstermine | (last updated: 06-Jan-2025) | ||||
| 2025 | |||||
| January | February | March | |||
| 07. 09. 09. 10. | SC: DELCODE AG Biomaterial Clinical Advisory Board Clinical Executive Board | 03. 06. 13. 13. 27. | SC: DESCRIBE-FTD/ALS/PSP Clinical Advisory Board AG Biomaterial Clinical Executive Board SC: DELCODE | 06. 13. 13. 27. | Clinical Advisory Board AG Biomaterial Clinical Executive Board SC: DELCODE |
| April | May | June | |||
| 03. 07. 10. 10. 24. | Clinical Advisory Board SC: DESCRIBE-FTD/ALS/PSP AG Biomaterial Clinical Executive Board SC: DELCODE | 08. 08. 15. 22. | AG Biomaterial Clinical Advisory Board Clinical Executive Board SC: DELCODE | 02. 05. 12. 12. 26. | SC: DESCRIBE-FTD/ALS/PSP Clinical Advisory Board AG Biomaterial Clinical Executive Board SC: DELCODE |
DECLARE - DZNE Clinical Research E-Learning Platform
Here you'll find DECLARE, the DZNE Clinical Research E-Learning Platform. The Terms of Use can be downloaded here:
Regarding access to DECLARE, please contact the Clinical Research Platform of the DZNE.
SARA Training Tool
The SARA training tool provides comprehensive and standardized training material to reduce variability in applying the SARA (Scale for Assessment and Rating of Ataxia). The SARA scores shown were recorded according to a standardized protocol and rated by three clinical experts in consensus.
Four hundred thirty-eight videos of 67 patients are included in the SARA training tool:
- The tutorial section demonstrates a complete SARA examination on a healthy control.
- In the training section, users can access a video library covering the complete SARA range and compare their ratings to consensus ratings.
- The tool also includes a section that allows optional certification.
- More information about SARA:
Members of the Ataxia Global Initiative can apply for free access to the SARA Training Tool using this request form. Be sure to include a copy (PDF) of your membership certificate with your application.
To apply for free membership of the Ataxia Global Initiative, please contact the Ataxia Global Initiative directly.
For fee-based use of the SARA Training Tool in the context of commercial clinical trials, please contact our Technology Transfer Office.
For further questions on the use of the SARA Training Tool (e.g., for scientific use independent of the membership in the Ataxia Global Initiative), please contact the Clinical Research Platform of the DZNE.
German Network of Memory Outpatient Clinics (DNG)
The German Network of Memory Outpatient Clinics (DNG - Deutsches Netzwerk Gedächtnisambulanzen) offers its members training and exercise material (in German only) for standardized diagnostics. The content provided has been created and reviewed by the DNG working groups. Further information on learning content can be obtained from the e working group leaders.
Members of the DNG can apply for free access to the DECLARE learning platform using this form. Please be sure to enclose a copy (PDF) of your membership certificate with your application.
Please apply for the DNG membership certificate by e-mail to Jennifer Michels (Universitätsklinikum Aachen). Please send the application form and membership certificate to the Clinical Research Platform of the DZNE.
Central Contact Management / Content Responsibility
Central Contact Management
The central contact management is the point of contact for study participants (probands) in the case of a request for information or deletion.
zentrale-kontaktstelle-kf(at)dzne.de
Content responsibility
The Clinical Research Platform is responsible for the contents of DZNE's Clinical Research website.