Summary
07/02/2023 Data Management

Data Management

The DAC is committed to open, transparent, responsible and reproducible science. We apply these principles to our own work and to the support we give researchers, and we help teams understand and put the FAIR principles into practice.

Service catalog

  • Electronic data capture with REDCap
  • eCRF and study design
  • Clinical research data management
  • Support longitudinal research projects, e.g. NeuroPrems & NEIMO
  • Pseudonymisation for GDPR compliant data management
  • Biosample data management and cataloguing
  • Data brokering for data repositories, including the UK Biobank
  • Data curation and integration into the Institute’s data warehouse
  • Data Management Plan support and FAIR data guidance

Data Management Plans

The Paris Brain Institute requires a Data Management Plan (DMP) for every research project, as do most French and European funders. A DMP describes what happens to your data across the whole project: how they are collected and processed, which methods and standards apply, how they will be shared and made openly available, and how they will be curated and preserved for the long term. This is what makes the data findable, accessible, interoperable and reusable (FAIR). We researcher in this through OPIDoR, a machine-actionable platform from Inist-CNRS for building DMPs that meet European Commission and ANR requirements. Our step-by-step guide covers registering an account and opening the Science Europe template, which comes with examples and guidance. For help with your own plan, write to dmp@icm-institute.org to arrange a consultation. We recommend doing this before you begin a project or a grant application.

Studies involving human subjects

Every study involving humans must be validated by the Human Studies Coordinator. For clinical studies, your first contact is the RIPH support unit, which will coordinate the data management with us. Request support using this form.

REDCap

REDCap is a secure web application for building and managing online surveys and databases, built to support compliance with 21 CFR Part 11, FISMA, HIPAA, and GDPR. DAC provides standardised, validated forms and questionnaires for clinical and cognitive research data, along with training across all aspects of REDCap data management. To find out more or arrange a first meeting with our data managers, contact us.

REDCap servers

The Paris Brain Institute is part of the REDCap Consortium, an international network of institutions running their own REDCap systems. We manage the following:

Pseudonymization

We can provide tools to manage pseudonymised datasets. Direct identifiers are replaced with study codes, and the key linking the two is held separately under controlled access.

Data brokering

We also act as data broker for external repositories such as the UK Biobank. These repositories do not release data on request. Access depends on an approved application, a signed access agreement, and an institution that takes responsibility for how the data are handled. We prepare and submit the application on the team’s behalf, then retrieve the approved dataset and deliver it to you in a usable form on secure Institute storage. We also track what each agreement allows, so that your analyses and publications stay within its terms.

Biosample data management

We support the management and cataloguing of biosample data, so that samples remain traceable and linked to the clinical data collected alongside them.

Data warehouse

We curate datasets for integration into the Institute’s data warehouse, which involves cleaning them, documenting the variables, and mapping them onto shared standards so that they can be found and reused across teams.

Navigating Open (Neuro)science

Open-science policies, standards and frameworks are hard to navigate, and the acronyms often assume a background in data engineering, science policy, or metascience. Our interactive graph of the open neuroscience ecosystem lets you explore the landscape, with an extensive glossary covering the key terms and abbreviations.

Contact

For any questions, write to the data management team.