On the 5th and 6th of February 2026, EP PerMed organised a two-day, fully in-person Training on Data Management at the offices of ANR, in Paris, held back-to-back with the ERA PerMed JTC2022 midterm seminar.
The training was conducted within the framework of Task 5.7 – Tackling ELSA within EP PerMed, led by AICIB, and aimed at strengthening ethical, legal and responsible data practices within the Personalised Medicine scientific field.
Report
The event brought together 29 participants selected through a competitive application process. Attendees included senior and junior researchers, clinicians, data professionals, project managers and entrepreneurs. The group reflected a broad geographical diversity, with participants from several European countries (e.g. Italy, Portugal, Spain, Germany, France and The Netherlands), including peripheral and under-represented regions, namely Moldova and Latvia, besides Tunisia, Türkiye and South Africa.
Delivered by experts from ELIXIR – European life-science data infrastructure, namely from the Portuguese and Norwegian Nodes, the training addressed key topics such as data collection, reusability, processing and analysis, preservation, sharing (including human data deposition in EGA), and Data Management Planning. Particular emphasis was placed on FAIR data principles, regulatory compliance under Horizon Europe, research integrity, reproducibility, transparency and responsible dissemination of scientific results.
The intensive programme combined theoretical inputs with interactive discussions and case studies, reinforcing the importance of secure, ethical and socially responsible data management in advancing trustworthy and impactful Personalised Medicine research.
To ensure sustained impact and wider accessibility, the training materials will be made available through the ELSA Helpdesk, supporting the broader EP PerMed scientific community.
Logistics and Communication
Format
Two-half day physical event.
In person training, with theoretical sessions followed by practical exercises adapted to PM research community, with a focus on handling human genomic data.
Target groups
PM scientific community (researchers, clinicians, healthcare providers, lab managers)
Date
05-06 February 2026
back-to-back with the ERA PerMed JTC 2022 Midterm Seminar (on invitation only)
Trainers
Daniel Faria – ELIXIR-PT / INESC-ID / Instituto Superior Técnico
Jorge Oliveira – ELIXIR-PT / INESC-ID / Instituto Superior Técnico
Korbinian Bösl – ELIXIR-NO / University of Bergen
Downloads
Agenda
Day 1, 5 February 2026
| Time | Session |
|---|---|
| 09:00 – 09:30 | EP PerMed Introduction |
| 09:30 – 10:30 | Introduction to RDM |
| 10:30 – 10:45 | Coffee Break |
| 10:45 – 11:15 | Data Reuse Overview Secondary use of data and key issues |
| 11:15 – 11:45 | Data Reuse Hands-On Group exercise using Beacon and EGA for data discovery |
| 11:45 – 12:15 | Data Collection Overview Key RDM issues during data collection |
| 12:15 – 13:00 | Data Collection Hands-On Group exercise showcasing good data collection practices using an electronic lab notebook |
| 13:00 – 14:00 | Lunch Break |
| 14:00 – 14:45 | Data Collection Hands-On (cont.) |
| 14:45 – 15:15 | Data Processing & Analysis Overview Key RDM issues during data processing and analysis |
| 15:15 – 16:30 | Data Processing & Analysis Hands-On Group exercise showcasing data processing and analysis workflows on Galaxy |
| 16:30 – 16:45 | Wrap Up Quick discussion of the day’s lessons |
Day 2, 6 February 2026
| Time | Session |
|---|---|
| 09:30 – 09:40 | Quick Recap Short summary of day 1 and introduction to day 2 |
| 09:40 – 10:00 | Data Preservation Overview Key RDM issues regarding data preservation |
| 10:00 – 10:45 | Data Storage Hands-On Group exercise estimating storage costs (using DSW) |
| 10:45 – 11:00 | Coffee Break |
| 11:00 – 11:30 | Data Sharing Overview Key RDM issues concerning data sharing |
| 11:30 – 13:00 | Data Sharing Hands-On Group exercise on human data deposition EGA |
| 13:00 – 14:00 | Lunch Break |
| 14:00 – 14:30 | Data Management Planning Overview Discussion of the key issues at the stage of planning |
| 14:30 – 16:00 | Data Management Planning Hands-On Group exercise drafting a data management plan (using DSW) |
| 16:00 – 16:30 | Wrap Up & Feedback Quick discussion of the course’s lessons and filling of feedback form |