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  4. Real-world patterns in remote longitudinal study participation: A study of the Swiss Multiple Sclerosis Registry
 
research article

Real-world patterns in remote longitudinal study participation: A study of the Swiss Multiple Sclerosis Registry

Daniore, Paola  
•
Yan, Chuqiao
•
Stanikic, Mina
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November 1, 2024
PLOS Digital Health

Remote longitudinal studies are on the rise and promise to increase reach and reduce participation barriers in chronic disease research. However, maintaining long-term retention in these studies remains challenging. Early identification of participants with different patterns of long-term retention offers the opportunity for tailored survey adaptations. Using data from the online arm of the Swiss Multiple Sclerosis Registry (SMSR), we assessed sociodemographic, health-related, and daily-life related baseline variables against measures of longterm retention in the follow-up surveys through multivariable logistic regressions and unsupervised clustering analyses. We further explored follow-up survey completion measures against survey requirements to inform future survey designs. Our analysis included data from 1,757 participants who completed a median of 4 (IQR 2-8) follow-up surveys after baseline with a maximum of 13 possible surveys. Survey start year, age, citizenship, MS type, symptom burden and independent driving were significant predictors of long-term retention at baseline. Three clusters of participants emerged, with no differences in longterm retention outcomes revealed across the clusters. Exploratory assessments of followup surveys suggest possible trends in increased survey complexity with lower rates of survey completion. Our findings offer insights into characteristics associated with long-term retention in remote longitudinal studies, yet they also highlight the possible influence of various unexplored factors on retention outcomes. Future studies should incorporate additional objective measures that reflect participants' individual contexts to understand their ability to remain engaged long-term and inform survey adaptations accordingly.

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Type
research article
DOI
10.1371/journal.pdig.0000645
Web of Science ID

WOS:001416931800001

PubMed ID

39504333

Author(s)
Daniore, Paola  

École Polytechnique Fédérale de Lausanne

Yan, Chuqiao

Zurich University of Applied Sciences

Stanikic, Mina

University of Zurich

Iaquinto, Stefania

University of Zurich

Ammann, Sabin

University of Zurich

Kamm, Christian P.

University of Bern

Zecca, Chiara

Universita della Svizzera Italiana

Calabrese, Pasquale

University of Basel

Steinemann, Nina

University of Zurich

von Wyl, Viktor

University of Zurich

Date Issued

2024-11-01

Publisher

PUBLIC LIBRARY SCIENCE

Published in
PLOS Digital Health
Volume

3

Issue

11

Article Number

e0000645

Subjects

HEALTH

•

PEOPLE

•

INTERVENTIONS

•

FEASIBILITY

•

DROPOUT

•

VIEWS

•

MS

•

Science & Technology

•

Life Sciences & Biomedicine

Editorial or Peer reviewed

REVIEWED

Written at

EPFL

EPFL units
C4DT-GE  
Available on Infoscience
February 18, 2025
Use this identifier to reference this record
https://infoscience.epfl.ch/handle/20.500.14299/247040
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