학술논문
Recontacting biobank participants to collect lifestyle, behavioural and cognitive information via online questionnaires: lessons from a pilot study within FinnGen
Document Type
article
Author
Oskari Heikinheimo; Athena Matakidou; Jaakko Kaprio; Ying Wu; Kai Kaarniranta; Peeter Karihtala; Wei Zhou; Caroline Fox; Sarah Smith; Apinya Lertratanakul; Katri Kaukinen; Johannes Kettunen; Eeva Sliz; Markus Perola; Veikko Salomaa; Hilkka Soininen; Ilkka Kalliala; Mika Kähönen; Hao Chen; Andrey Loboda; Laure Morin-Papunen; Terhi Piltonen; Anders Mälarstig; Jason Miller; Jussi Hernesniemi; Henrike Heyne; Sirkku Peltonen; Daniel Gordin; Masahiro Kanai; Benjamin Challis; Juha Sinisalo; David Rice; Fredrik Åberg; Aarno Palotie; Samuli Ripatti; Oili Kaipiainen-Seppänen; Aki Havulinna; Satu Strausz; Tuomo Kiiskinen; Sanni Ruotsalainen; Jukka Koskela; Tuula Palotie; Mark Daly; Howard Jacob; Heiko Runz; Sally John; Robert Plenge; Mark McCarthy; Julie Hunkapiller; Dawn Waterworth; Petri Virolainen; Terhi Kilpi; Jukka Partanen; Anne Pitkäranta; Veli-Matti Kosma; Outi Tuovila; Raimo Pakkanen; Shameek Biswas; Xinli Hu; Johanna Schleutker; Mikko Arvas; Olli Carpen; Reetta Hinttala; Arto Mannermaa; Valtteri Julkunen; Anne Remes; Reetta Kälviäinen; Mikko Hiltunen; Jukka Peltola; Pentti Tienari; Juha Rinne; Adam Ziemann; Jeffrey Waring; Nizar Smaoui; Anne Lehtonen; Susan Eaton; Sanni Lahdenperä; Natalie Bowers; Edmond Teng; Fanli Xu; David Pulford; Martti Färkkilä; Sampsa Pikkarainen; Airi Jussila; Timo Blomster; Mikko Kiviniemi; Markku Voutilainen; Fedik Rahimov; Joseph Maranville; Tim Lu; Kirsi Kalpala; Melissa Miller; Linda McCarthy; Kari Eklund; Antti Palomäki; Pia Isomäki; Laura Pirilä; Johanna Huhtakangas; Marla Hochfeld; Nan Bing; Jorge Esparza Gordillo; Nina Mars; Tarja Laitinen; Margit Pelkonen; Paula Kauppi; Hannu Kankaanranta; Terttu Harju; Hubert Chen; Teemu Niiranen; Kaj Metsärinne; Marja-Riitta Taskinen; Tiinamaija Tuomi; Jari Laukkanen; Audrey Chu; Jaakko Parkkinen; Heikki Joensuu; Tuomo Meretoja; Lauri Aaltonen; Annika Auranen; Päivi Auvinen; Klaus Elenius; Relja Popovic; Jennifer Schutzman; Heli Lehtonen; Stefan McDonough; Diptee Kulkarni; Terhi Ollila; Hannu Uusitalo; Erich Strauss; Kaisa Tasanen; Laura Huilaja; Katariina Hannula-Jouppi; Teea Salmi; Leena Koulu; David Choy; Anu Jalanko; Risto Kajanne; Mari Kaunisto; Chia-Yen Chen; Robert Yang; Kirsi Auro; Clement Chatelain; Mitja Kurki; Juha Karjalainen; Kimmo Palin; Priit Palta; Susanna Lemmelä; Manuel Rivas; Arto Lehisto; Andrea Ganna; Vincent Llorens; Kati Kristiansson; Kati Hyvärinen; Jarmo Ritari; Katri Pylkäs; Minna Karjalainen; Tuomo Mantere; Eeva Kangasniemi; Sami Heikkinen; Eija Laakkonen; Anu Loukola; Päivi Laiho; Tuuli Sistonen; Essi Kaiharju; Markku Laukkanen; Elina Järvensivu; Sini Lähteenmäki; Lotta Männikkö; Regis Wong; Hannele Mattsson; Kati Donner; Kalle Pärn; Elina Kilpeläinen; Hannele Laivuori; Harri Siirtola; Lila Kallio; Sirpa Soini; Teijo Kuopio; Ioanna Tachmazidou; Katja Kivinen; Pekka Nieminen; Adam Platt; Sanna Toppila-Salmi; Antti Mäkitie; Elmo Saarentaus; Kristiina Aittomäki; Elisabeth Widen; Marja Vääräsmäki; Erkki Isometsä; Jari Lahti; Laura Addis; Taneli Raivio; Mart Kals; Majd Mouded; Hanna Ollila; Vuokko Anttonen; Robert Graham; Amanda Elliott; Ali Abbasi; Bridget Riley-Gills; Dirk Paul; Katherine Klinger; Deepak Raipal; Antti Hakanen; Raisa Serpi; Johanna Mäkelä; Mengzhen Liu; Neha Raghavan; Adriana Huertas-Vazquez; Nicole Renaud; Roosa Kallionpää; John Eicher; Minna Raivio; Juulia Partanen; Riitta Lahesmaa; Glenda Lassi; Joanna Betts; Rajashree Mishra; Felix Vaura; Joel Rämö; Mary Pat Reeve; Johanna Mattson; Sauli Vuoti; Esa Pitkänen; Joni A Turunen; Stephanie Loomis; Pirkko Pussinen; Aino Salminen; Tuula Salo; Ulla Palotie; Maria Siponen; Liisa Suominen; Päivi Mäntylä; Ulvi Gursoy; Kirsi Sipilä; Venla Kurra; Laura Kotaniemi-Talonen; Outi Uimari; Taru Tukiainen; Niko Välimäki; Janet Kumar; Juha Mehtonen; Shabbeer Hassan; Pietro Della Briotta Parolo; Mutaamba Maasha; Javier Garcia-Tabuenca; Jiwoo Lee; Kristin Tsuo; Nina Pitkänen; Eero Punkka; Huei-Yi Shen; Mervi Aavikko; L. Elisa Lahtela; Timo P. Sipilä; Awaisa Ghazal; Sami Koskelainen; Teemu Paajanen; Shuang Luo; Tiina Luukkaala; Iida Vähätalo; Tero Jyrhämä; Marco Hautalahti; Tom Southerington; Jaana Suvisaari; Zhihao Ding; Qingqin S Li; Amy Hart; Rodosthenis S Rodosthenous; Mari E K Niemi; Merja Perala; Perttu Terho; Theresa Knopp; Enni M Makkonen; Paula Nurmi; Pauli Wihuri; Corianna Moffatt; Paolo Martini; Laura Germine; Viola A Makela; Oona A Karhunen; Tero S Hiekkalinna; Alessandro Porello; Anastasia Kytölä; Antti Aarnisalo; Aoxing Liu; Argyro Bizaki-Vallaskangas; Auli Toivola; Debby Ngo; Dermot Reilly; Ekaterina Khramtsova; Elisa Rahikkala; Eric Green; Eveliina Salminen; Fabiana Farias; George Okafo; Heidi Silven; Heli Salminen-Mankonen; Henna Palin; Iiris Hovatta; Jaakko Tyrmi; Jae-Hoon Sul; Jenni Aittokallio; Jyrki Pitkänen; Karen He; Katriina Aalto-Setälä; Maarit Niinimäki; Malla-Maria Linna; Marc Jung; Margaret G. Ehm; Marianna Niemi; Meijian Guan; Mike Mendelson; Minna Brunfeldt; Natalia Pujol; Nathan Lawless; Oluwaseun Alexander Dada; Rigbe Weldatsadik; Riikka Arffman; Rion Pendergrass; Sahar Mozaffari; Samuel Lessard; Sanna Siltanen; Shanmukha Sampath Padmanabhuni; Simonne Longerich; Susanna Savukoski; Thomas Damm Als; Timo Hiltunen; Tomi P. Mäkelä; Triin Laisk; Tytti Willberg; Varpu Jokimaa
Source
BMJ Open, Vol 12, Iss 10 (2022)
Subject
Language
English
ISSN
2044-6055
Abstract
Objectives To recontact biobank participants and collect cognitive, behavioural and lifestyle information via a secure online platform.Design Biobank-based recontacting pilot study.Setting Three Finnish biobanks (Helsinki, Auria, Tampere) recruiting participants from February 2021 to July 2021.Participants All 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.Results The 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.Conclusion In 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.