Participant engagement and involvement in longitudinal cohort studies: qualitative insights from a selection of pregnancy and birth, twin, and family-based population cohort studies
This study of PEI among well-established cohort studies underscores the importance of PEI for project sustainability and highlights key factors to consider in developing PEI. Our analysis shows that knowledge gaps exist regarding which approaches have highest impact on retention rates and are best suited for different participant groups. Research is needed to support the development of best practices for PEI as well as knowledge exchange between cohorts through network building.
Authors
- Isabelle Budin‐Ljøsne (ORCID: https://orcid.org/0000-0002-4610-1662)
- Shona M. Kerr (ORCID: https://orcid.org/0000-0002-4137-1495)
- María Paz García (ORCID: https://orcid.org/0000-0001-9970-6131)
- Robin Flaig (ORCID: https://orcid.org/0000-0001-8007-1279)
- Aamnah Rahman (ORCID: https://orcid.org/0000-0003-3534-6100)
- Nanna Alida Grit Fredheim (ORCID: https://orcid.org/0000-0001-6110-125X)
- Alexandra Havdahl (ORCID: https://orcid.org/0000-0002-9268-0423)
- Lynn Molloy
- Gonneke Willemsen (ORCID: https://orcid.org/0000-0003-3755-0236)
- Marie-Aline A Charles (ORCID: https://orcid.org/0000-0003-4025-4390)
- Janine F. Felix (ORCID: https://orcid.org/0000-0002-9801-5774)
- Shahid Islam (ORCID: https://orcid.org/0000-0002-7424-4011)
- Jennifer R. Harris (ORCID: https://orcid.org/0000-0003-3249-8918)
- Costanza Pizzi (ORCID: https://orcid.org/0000-0002-4519-2822)
- Diane P. Wood (ORCID: https://orcid.org/0000-0003-1108-5858)
- Inger Kristine Meder (ORCID: https://orcid.org/0000-0002-0743-419X)
- Susan Morton (ORCID: https://orcid.org/0000-0002-2231-7020)
- Charlotte Alison Jevne
- Bojana Milanovic Kleven
Institutions
- Statens Serum Institut (DK)
- University of Technology Sydney (AU)
- Norwegian Institute of Public Health (NO)
- Inserm (FR)
- The University of Western Australia (AU)
- King's College London (GB)
- University of Oslo (NO)
- Høyskolen Kristiania (NO)
- Bradford Royal Infirmary (GB)
- Erasmus MC (NL)
- University of Bristol (GB)
- Lovisenberg Diakonale Høgskole (NO)
- Bradford Teaching Hospitals NHS Foundation Trust (GB)
- University of Turin (IT)
- Vrije Universiteit Amsterdam (NL)
- Medical Research Council (GB)
- University of Edinburgh (GB)
Publication Details
- Journal
- BMC Medical Research Methodology
- Published
- 2024-12-03
- DOI
- https://doi.org/10.1186/s12874-024-02419-8
- Citations
- 6
- Primary Topic
- Mental Health and Patient Involvement
- Type
- article
- Field-Weighted Citation Impact
- 5.10
Funders
- Medical Research Council
- Norwegian Institute of Public Health