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European platform for neurodegenerative disorders


SOP minimal dataset for data glossary

SOP minimal dataset for data glossary from T33 SOP minimal dataset

Framework design & roadmap of the EPND Platform node of ADWB defining standards, biobank facilities, federated components, roles and time plan

Framework design roadmap of the EPND Platform node of ADWB defining standards biobank facilities federated components roles and time plan

Data Management Plan

The Data Management Plan DMP will report on the following data protection requirements partner verification and confirmation of any special derogations of data subject rights in crossborder contexts international transfers partner declarations of compliance with national frameworks transparent DPO contact information and GDPR role assignments Verification and documentation will be carried out by the ELSI Officer as part of T242 The Officer will review a checklist of each of these elements as part of assisting cohorts in implementing the consortium materialdata transfer agreement templates The DMP will also incorporate data protection issues especially sections 4 Data security and 5 Ethics of the DMP template1 The concerned consortium members must check and confirm to IMI JU if special derogations pertaining to the rights of data subjects or the processing of genetic andor health data have been established under the national legislation of the country where the research takes place and provide a declaration of compliance with respective national legal frameworks2 If applicable if case personal data are transferred from the EU to a nonEU country or international organisation confirmation that such transfers are in accordance with Chapter V of the General Data Protection Regulation 2016679 GDPR must be provided3 The consortium members must confirm that contact details of the Data Protection Officer DPO were made available to all data subjects involved in the research For the members of the consortium not required to appoint a DPO under the General Data Protection Regulation a detaileddata protection policy for the project must be elaborated and kept on file It must be provided to IMI JU upon request4 The role of controllerjoint controller and data processor among consortiums partners must be clarified In particular in case of joint controllership the consortium must clarify if and how Article 26 of the GDPR will be implemented also concerning the agreement referred to in paragraph 1 of that provision

Data Protection Impact Assessment

Data Protection Impact Assessment

Report on kick-off meeting

Report on kickoff meeting

EPND Cohort Classification Scheme

EPND Cohort Classification Scheme

Project management tools for project tracking and reporting

Project management tools for project tracking and reporting

SOP for biomarker validation

SOP for biomarker validation from T34 SOP validation

"General Assembly (GA) meeting #1: minutes and decisions"

General Assembly GA meeting 1 minutes and decisions

Best practices for biobanking

Best practices for biobanking from T31 Best practices for biobanking

SOP body materials collection

SOP body materials collection from T32 SOP body materials collection


Data and sample sharing as an enabler for large-scale biomarker research and development: The EPND perspective

Author(s): Niranjan Bose1, Anthony J. Brookes, Phil Scordis and Pieter Jelle Visser, on behalf of the EPND Consortium
Published in: Frontiers in Neurology, Issue November 2022, 2022, Page(s) online, ISSN 1664-2295
Publisher: Frontiers Research Foundation
DOI: 10.3389/fneur.2022.1031091

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