Clinical Research with databases: The Basics & Beyond Workshop in clinical epidemiological research for ERNs

  • 30 septembre 2021 - 14:00
  • Hotel Golden Tulip Leiden Centre, Schipholweg 3, 2316 XB Leiden, The Netherlands

Organiser – Olaf Dekkers
30 September – 1 October 2021
Leiden, the Netherlands


Research on rare conditions can be a great challenge, both practical and methodological. To counteract small study populations with a rare disease, large, collaborative, international datasets and registries are currently being erected for multiple disease groups. Analyzing, and subsequently drawing conclusions based on these datasets requires knowledge of the appropriate epidemiological techniques. In this workshop, we will provide participants with the theoretical and practical knowledge needed to perform clinical epidemiological analyses appropriate for the emerging landscape of European, and ERN based large datasets.

Face to face workshop with a small group (20-25) of European specialists with specific interest in Clinical Research with databases.
It will consist of both presentations by experts in the field of Epidemiology as well as a feedback session on the research projects of participants. Suggestions for cross-ERN scientific studies will be discussed and start-ups will be encouraged during the event.

To enable clinical researchers of all career stages to plan, perform and analyze large datasets in an appropriate manner, taking into account characteristics of research in rare diseases.

The main participants of this workshop will be
a) ERN clinical researchers, based in ERN HCPs
b) ePAG advocate researchers.
Basic knowledge of epidemiological methods and techniques is required. In total, the workshop is expected to unite approximately 20-25 participants.

This workshop will take place in a small group of participants in a location allowing for all COVID-19 restrictions to be in place. All sessions are plenary, apart from a forum in which participants can discuss their own research projects and associated epidemiological questions.

In advance of the meeting, we plan to provide all participants with preparatory materials to enable a basic understanding of the aims and objectives of the workshop. This preparatory activity will also include a very short survey to help us tailor the sessions to the needs of our audience as a whole, plus any specific challenges for individual ERNs.

To register please fill the application form here until June 25th , 2021

The training workshop is free of charge, including the dinner and accommodation on the evening of September 30th. For reimbursement of the travel costs, please contact the organizers.

Affiliated to an ERN-Full Member or Affiliated Partner institution.

The organizer together with one member of the WP17 Scientific Evaluation Committee will select the most appropriate workshop participants based on experience with (clinical) epidemiology and the question whether the actual scientific work fits the course program.
All registered participants will be informed if they are selected to attend this training course before July 9th, 2021.

At the end of the training workshop a Certificate of Attendance will be sent to the participants who attended the entire workshop.
No credits of Continuing Education in Medicine will be issued.

Workshops will run in English. 

Hotel Golden Tulip Leiden Centre
Schipholweg 3
2316 XB Leiden
The Netherlands

If you have specific questions, please write to the workshop organizer:
Iris Pelsma, on behalf of Olaf Dekkers
Leiden University Medical Center

Questions related to organization of travelling hotel, dinner should be addressed to:
Tamara Wienen-Groen
Leiden University Medical Center

For general inquiries about the workshops in the ERN RD Support and Training Program please write to:

You will find the programme here.


  • Start Date:30 septembre 2021
  • Start Time:14:00
  • End Date:1 octobre 2021
  • End Time:15:00
  • Location:Hotel Golden Tulip Leiden Centre, Schipholweg 3, 2316 XB Leiden, The Netherlands