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Online Workshop Day 1: Participant engagement in longitudinal population studies/cohorts

12 October 2021 @ 14:00 - 16:00


This webinar takes places over 2 days, for 2 hours each:
Day 1: October 12th, 2021. 14:00-16:00h (CEST)
Day 2: October 14th, 2021. 14:00-16:00h (CEST)
You are welcome to attend either or both sessions!


Description: Retaining several generations of participants in longitudinal cohorts and ensuring that the participants continuously contribute with new data and support data sharing, is challenging. Participants gradually drop out, do not respond to data collection requests, or simply lose interest in the study. Young people, disadvantaged socio-economic groups, and ethnic minorities are particularly difficult to retain for a long period of time.

Participant engagement aims to maintain the interest of participants in the study and encourage their participation and commitment over its lifetime. European cohorts are gradually developing participant engagement strategies including innovative tools for recruitment and informed consent collection, data collection and ongoing communication with, and involvement of, participants. At this digital workshop, the strategies of key European cohorts will be presented and discussed, and experiences exchanged. Work conducted to map participant engagement strategies in European cohorts will also be presented. The workshop is jointly organized by BBMRI-ERIC and Biobank Norway.



Day 1. October 12th, 2021. 14:00-16:00 CET. 

14:00 Welcome

Isabelle-Budin Ljøsne (Biobank Norway)

Mónica Cano Abadía (BBMRI-ERIC)

14:10 Topic 1: Recruiting participants across several generations

Speaker: Lynn Molloy, ALSPAC, UK

Short Q&A

14:35 Topic 2: Community Engagement / Coproduction and Citizen Science

Speaker:  Aamnah Rahman, Research Fellow and Shahid Islam, Senior Research Fellow, Born in Bradford, UK

Short Q&A

15:00 Topic 3: Recruiting and engaging participants in a web-based cohort

Speaker: Costanza Pizzi, NINFEA (Nascita e INFanzia: gli Effetti dell’Ambiente), Italy

Short Q&A

15:25 Q&A + Exchange
16:00 Closure



Day 2. October 14th, 2021. 14:00-16:00 CET.



Topic 4: Returning actionable research results to cohort participants

Speaker: Shona Kerr, VIKING GENES, UK

Short Q&A

14:25 Topic 5: Engaging with cohorts of young participants  

Speaker: Ana Cristina Santos, Geração 21, Portugal

Short Q&A

14:50 Topic 6: Participant engagement in times of pandemic

Speaker:  Robin Flaig, Clare Dolan and Rachel Edwards, Generation Scotland, UK

Short Q&A

15:15 Mapping participant engagement in European cohorts 

Speaker: Isabelle Budin-Ljøsne, Norwegian Institute of Public Health and Biobank Norway, Norway

15:35 Q&A + Exchange
16:00 Closure


Websites of cohorts


Born in Bradford:



Geração 21:

Generation Scotland:


View the recordings for Day 1 and Day 2.


12 October 2021
14:00 - 16:00
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Biobank Norway
BBMRI National Node

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