Evidence map›Paper›PMID 36198465›Full record

ArticleBMJ open2022

Recontacting biobank participants to collect lifestyle, behavioural and cognitive information via online questionnaires: lessons from a pilot study within FinnGen.

Rodosthenis S Rodosthenous, Mari E K Niemi, Lila Kallio, Merja Perala, Perttu Terho, Theresa Knopp, Eero Punkka, Enni M Makkonen, Paula Nurmi, Johanna Makela and 16 more

Abstract read
In one paragraph

Article in BMJ open, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 11 papers.

0numbers the graph read from it
0cells of the map it votes in
11citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

11 citing papers in PubMed.

  1. Trial
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

26 authors.

Rodosthenis S RodosthenousInstitute for Molecular Medicine Finland (FIMM), HiLIFE, University of Helsinki, Helsinki, Finland.ORCID 0000-0002-2312-5530
Mari E K NiemiInstitute for Molecular Medicine Finland (FIMM), HiLIFE, University of Helsinki, Helsinki, Finland.
Lila KallioTurku University Hospital (TYKS), Turku, Finland.
Merja PeralaTurku University Hospital (TYKS), Turku, Finland.
Perttu TerhoTurku University Hospital (TYKS), Turku, Finland.
Theresa KnoppHospital District of Helsinki and Uusimaa, Helsinki, Finland.
Eero PunkkaHospital District of Helsinki and Uusimaa, Helsinki, Finland.
Enni M MakkonenTampere University Hospital, Tampere, Finland.
Paula NurmiFinnish Institute for Health and Welfare, Helsinki, Finland.
Johanna MakelaFinnish Biobank Cooperative, Helsinki, Finland.
Pauli WihuriFinnish Biobank Cooperative, Helsinki, Finland.
Marco HautalahtiFinnish Biobank Cooperative, Helsinki, Finland.
Corianna MoffattThe Many Brains Project, Boston, Massachusetts, USA.
Paolo MartiniThe Many Brains Project, Boston, Massachusetts, USA.
Laura GermineThe Many Brains Project, Boston, Massachusetts, USA.
Viola A MakelaInstitute for Molecular Medicine Finland (FIMM), HiLIFE, University of Helsinki, Helsinki, Finland.
Oona A KarhunenInstitute for Molecular Medicine Finland (FIMM), HiLIFE, University of Helsinki, Helsinki, Finland.
Jari LahtiDepartment of Psychology and Logopedics, Faculty of Medicine University of Helsinki, Helsinki, Finland.
Tero S HiekkalinnaFinnish Institute for Health and Welfare, Helsinki, Finland.
Tero JyrhamaInstitute for Molecular Medicine Finland (FIMM), HiLIFE, University of Helsinki, Helsinki, Finland.
Huei-Yi ShenInstitute for Molecular Medicine Finland (FIMM), HiLIFE, University of Helsinki, Helsinki, Finland.
Heiko RunzTranslational Biology, Research and Development, Biogen Inc, Cambridge, Massachusetts, USA.
Aarno PalotieInstitute for Molecular Medicine Finland (FIMM), HiLIFE, University of Helsinki, Helsinki, Finland.
Markus PerolaFinnish Institute for Health and Welfare, Helsinki, Finland.
Andrea GannaInstitute for Molecular Medicine Finland (FIMM), HiLIFE, University of Helsinki, Helsinki, Finland andrea.ganna@helsinki.fi.
FinnGen

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectivesTo recontact biobank participants and collect cognitive, behavioural and lifestyle information via a secure online platform.

designBiobank-based recontacting pilot study.

settingThree Finnish biobanks (Helsinki, Auria, Tampere) recruiting participants from February 2021 to July 2021.

participantsAll eligible invitees were enrolled in FinnGen by their biobanks (Helsinki, Auria, Tampere), had available genetic data and were >18 years old. Individuals with severe neuropsychiatric disease or cognitive or physical disabilities were excluded. Lastly, 5995 participants were selected based on their polygenic score for cognitive abilities and invited to the study. Among invitees, 1115 had successfully participated and completed the study questionnaire(s). OUTCOME MEASURES: The primary outcome was the participation rate among study invitees. Secondary outcomes included questionnaire completion rate, quality of data collected and comparison of participation rate boosting strategies.

resultsThe overall participation rate was 18.6% among all invitees and 23.1% among individuals aged 18-69. A second reminder letter yielded an additional 9.7% participation rate in those who did not respond to the first invitation. Recontacting participants via an online healthcare portal yielded lower participation than recontacting via physical letter. The completion rate of the questionnaire and cognitive tests was high (92% and 85%, respectively), and measurements were overall reliable among participants. For example, the correlation (r) between self-reported body mass index and that collected by the biobanks was 0.92.

conclusionIn summary, this pilot suggests that recontacting FinnGen participants with the goal to collect a wide range of cognitive, behavioural and lifestyle information without additional engagement results in a low participation rate, but with reliable data. We suggest that such information be collected at enrolment, if possible, rather than via post hoc recontacting.

Indexed as

Biological Specimen BanksDuty to RecontactAdolescentCognitionHumansLife StylePilot ProjectsSurveys and QuestionnairesEPIDEMIOLOGYGENETICSPUBLIC HEALTH

Identifiers

PMID36198465
PMCPMC9535212

What OpenQuestion holds

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LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.