Recontacting biobank participants to collect lifestyle, behavioural and cognitive information via online questionnaires: lessons from a pilot study within FinnGen. Issue 10 (5th October 2022)

• Record Type: Journal Article
• Authors: Rodosthenous, Rodosthenis S; Niemi, Mari E K; Kallio, Lila; Perala, Merja; Terho, Perttu; Knopp, Theresa; Punkka, Eero; Makkonen, Enni M; Nurmi, Paula; Makela, Johanna; Wihuri, Pauli; Hautalahti, Marco; Moffatt, Corianna; Martini, Paolo; Germine, Laura; Makela, Viola A; Karhunen, Oona A; Lahti, Jari; Hiekkalinna, Tero S; Jyrhama, Tero; Shen, Huei-yi; Runz, Heiko; Palotie, Aarno; Perola, Markus; Ganna, Andrea
• Other Names: author non-byline.; Platt Adam author non-byline.; Ziemann Adam author non-byline.; Huertas-Vazquez Adriana author non-byline.; Salminen Aino author non-byline.; Jussila Airi author non-byline.; Havulinna Aki author non-byline.; Porello Alessandro author non-byline.; Abbasi Ali author non-byline.; Elliott Amanda author non-byline.; Hart Amy author non-byline.; Kytölä Anastasia author non-byline.; Mälarstig Anders author non-byline.; Loboda Andrey author non-byline.; Lehtonen Anne author non-byline.; Pitkäranta Anne author non-byline.; Remes Anne author non-byline.; Auranen Annika author non-byline.; Aarnisalo Antti author non-byline.; Hakanen Antti author non-byline.; Mäkitie Antti author non-byline.; Palomäki Antti author non-byline.; Jalanko Anu author non-byline.; Loukola Anu author non-byline.; Liu Aoxing author non-byline.; Lertratanakul Apinya author non-byline.; Bizaki-Vallaskangas Argyro author non-byline.; Lehisto Arto author non-byline.; Mannermaa Arto author non-byline.; Matakidou Athena author non-byline.; Chu Audrey author non-byline.; Toivola Auli author non-byline.; Ghazal Awaisa author non-byline.; Challis Benjamin author non-byline.; Riley-Gills Bridget author non-byline.; Fox Caroline author non-byline.; Chen Chia-Yen author non-byline.; Chatelain Clément author non-byline.; Gordin Daniel author non-byline.; Choy David author non-byline.; Pulford David author non-byline.; Rice David author non-byline.; Waterworth Dawn author non-byline.; Ngo Debby author non-byline.; Raipal Deepak author non-byline.; Reilly Dermot author non-byline.; Kulkarni Diptee author non-byline.; Paul Dirk author non-byline.; Teng Edmond author non-byline.; Kangasniemi Eeva author non-byline.; Sliz Eeva author non-byline.; Laakkonen Eija author non-byline.; Khramtsova Ekaterina author non-byline.; Järvensivu Elina author non-byline.; Kilpeläinen Elina author non-byline.; Rahikkala Elisa author non-byline.; Widen Elisabeth author non-byline.; Saarentaus Elmo author non-byline.; Green Eric author non-byline.; Strauss Erich author non-byline.; Isometsä Erkki author non-byline.; Pitkänen Esa author non-byline.; Kaiharju Essi author non-byline.; Salminen Eveliina author non-byline.; Farias Fabiana author non-byline.; Xu Fanli author non-byline.; Rahimov Fedik author non-byline.; Vaura Felix author non-byline.; Åberg Fredrik author non-byline.; Okafo George author non-byline.; Lassi Glenda author non-byline.; Ollila Hanna author non-byline.; Laivuori Hannele author non-byline.; Mattsson Hannele author non-byline.; Kankaanranta Hannu author non-byline.; Uusitalo Hannu author non-byline.; Chen Hao author non-byline.; Siirtola Harri author non-byline.; Silven Heidi author non-byline.; Joensuu Heikki author non-byline.; Lehtonen Heli author non-byline.; Salminen-Mankonen Heli author non-byline.; Palin Henna author non-byline.; Heyne Henrike author non-byline.; Soininen Hilkka author non-byline.; Jacob Howard author non-byline.; Chen Hubert author non-byline.; Vähätalo Iida author non-byline.; Hovatta Iiris author non-byline.; Kalliala Ilkka author non-byline.; Tachmazidou Ioanna author non-byline.; Kaprio Jaakko author non-byline.; Parkkinen Jaakko author non-byline.; Tyrmi Jaakko author non-byline.; Suvisaari Jaana author non-byline.; Sul Jae-Hoon author non-byline.; Kumar Janet author non-byline.; Laukkanen Jari author non-byline.; Ritari Jarmo author non-byline.; Miller Jason author non-byline.; Garcia-Tabuenca Javier author non-byline.; Waring Jeffrey author non-byline.; Aittokallio Jenni author non-byline.; Schutzman Jennifer author non-byline.; Lee Jiwoo author non-byline.; Betts Joanna author non-byline.; Rämö Joel author non-byline.; Huhtakangas Johanna author non-byline.; Mattson Johanna author non-byline.; Schleutker Johanna author non-byline.; Kettunen Johannes author non-byline.; Eicher John author non-byline.; Turunen Joni A author non-byline.; Gordillo Jorge Esparza author non-byline.; Maranville Joseph author non-byline.; Karjalainen Juha author non-byline.; Mehtonen Juha author non-byline.; Rinne Juha author non-byline.; Sinisalo Juha author non-byline.; Koskela Jukka author non-byline.; Partanen Jukka author non-byline.; Peltola Jukka author non-byline.; Hunkapiller Julie author non-byline.; Hernesniemi Jussi author non-byline.; Partanen Juulia author non-byline.; Pitkänen Jyrki author non-byline.; Kaarniranta Kai author non-byline.; Tasanen Kaisa author non-byline.; Metsärinne Kaj author non-byline.; Pärn Kalle author non-byline.; He Karen author non-byline.; Eklund Kari author non-byline.; Hannula-Jouppi Katariina author non-byline.; Klinger Katherine author non-byline.; Donner Kati author non-byline.; Hyvärinen Kati author non-byline.; Kristiansson Kati author non-byline.; Kivinen Katja author non-byline.; Kaukinen Katri author non-byline.; Pylkäs Katri author non-byline.; Aalto-Setälä Katriina author non-byline.; Palin Kimmo author non-byline.; Auro Kirsi author non-byline.; Kalpala Kirsi author non-byline.; Sipilä Kirsi author non-byline.; Elenius Klaus author non-byline.; Aittomäki Kristiina author non-byline.; Tsuo Kristin author non-byline.; Elisa Lahtela L. author non-byline.; Addis Laura author non-byline.; Huilaja Laura author non-byline.; Kotaniemi-Talonen Laura author non-byline.; Pirilä Laura author non-byline.; Morin-Papunen Laure author non-byline.; Aaltonen Lauri author non-byline.; Koulu Leena author non-byline.; Suominen Liisa author non-byline.; McCarthy Linda author non-byline.; Männikkö Lotta author non-byline.; Niinimäki Maarit author non-byline.; Mouded Majd author non-byline.; Linna Malla-Maria author non-byline.; Rivas Manuel author non-byline.; Jung Marc author non-byline.; Ehm Margaret G. author non-byline.; Pelkonen Margit author non-byline.; Kaunisto Mari author non-byline.; Siponen Maria author non-byline.; Niemi Marianna author non-byline.; Vääräsmäki Marja author non-byline.; Taskinen Marja-Riitta author non-byline.; Daly Mark author non-byline.; McCarthy Mark author non-byline.; Laukkanen Markku author non-byline.; Voutilainen Markku author non-byline.; Hochfeld Marla author non-byline.; Kals Mart author non-byline.; Färkkilä Martti author non-byline.; Reeve Mary Pat author non-byline.; Kanai Masahiro author non-byline.; Guan Meijian author non-byline.; Miller Melissa author non-byline.; Liu Mengzhen author non-byline.; Aavikko Mervi author non-byline.; Helminen Mika author non-byline.; Kähönen Mika author non-byline.; Mendelson Mike author non-byline.; Arvas Mikko author non-byline.; Hiltunen Mikko author non-byline.; Kiviniemi Mikko author non-byline.; Brunfeldt Minna author non-byline.; Karjalainen Minna author non-byline.; Raivio Minna author non-byline.; Kurki Mitja author non-byline.; Maasha Mutaamba author non-byline.; Bing Nan author non-byline.; Pujol Natalia author non-byline.; Bowers Natalie author non-byline.; Lawless Nathan author non-byline.; Raghavan Neha author non-byline.; Renaud Nicole author non-byline.; Välimäki Niko author non-byline.; Mars Nina author non-byline.; Pitkänen Nina author non-byline.; Smaoui Nizar author non-byline.; Kaipiainen-Seppänen Oili author non-byline.; Carpén Olli author non-byline.; Dada Oluwaseun Alexander author non-byline.; Heikinheimo Oskari author non-byline.; Tuovila Outi author non-byline.; Uimari Outi author non-byline.; Auvinen Päivi author non-byline.; Laiho Päivi author non-byline.; Mäntylä Päivi author non-byline.; Kauppi Paula author non-byline.; Karihtala Peeter author non-byline.; Nieminen Pekka author non-byline.; Tienari Pentti author non-byline.; Virolainen Petri author non-byline.; Isomäki Pia author non-byline.; Parolo Pietro Della Briotta author non-byline.; Pussinen Pirkko author non-byline.; Palta Priit author non-byline.; Li Qingqin S author non-byline.; Pakkanen Raimo author non-byline.; Serpi Raisa author non-byline.; Mishra Rajashree author non-byline.; Hinttala Reetta author non-byline.; Kälviäinen Reetta author non-byline.; Wong Regis author non-byline.; Popovic Relja author non-byline.; Weldatsadik Rigbe author non-byline.; Arffman Riikka author non-byline.; Lahesmaa Riitta author non-byline.; Pendergrass Rion author non-byline.; Kajanne Risto author non-byline.; Graham Robert author non-byline.; Plenge Robert author non-byline.; Yang Robert author non-byline.; Kallionpää Roosa author non-byline.; Mozaffari Sahar author non-byline.; John Sally author non-byline.; Heikkinen Sami author non-byline.; Koskelainen Sami author non-byline.; Pikkarainen Sampsa author non-byline.; Lessard Samuel author non-byline.; Ripatti Samuli author non-byline.; Siltanen Sanna author non-byline.; Toppila-Salmi Sanna author non-byline.; Lahdenperä Sanni author non-byline.; Ruotsalainen Sanni author non-byline.; Smith Sarah author non-byline.; Strausz Satu author non-byline.; Vuoti Sauli author non-byline.; Hassan Shabbeer author non-byline.; Biswas Shameek author non-byline.; Padmanabhuni Shanmukha Sampath author non-byline.; Luo Shuang author non-byline.; Longerich Simonne author non-byline.; Lähteenmäki Sini author non-byline.; Peltonen Sirkku author non-byline.; Soini Sirpa author non-byline.; McDonough Stefan author non-byline.; Loomis Stephanie author non-byline.; Eaton Susan author non-byline.; Lemmelä Susanna author non-byline.; Savukoski Susanna author non-byline.; Raivio Taneli author non-byline.; Laitinen Tarja author non-byline.; Tukiainen Taru author non-byline.; Salmi Teea author non-byline.; Niiranen Teemu author non-byline.; Paajanen Teemu author non-byline.; Kuopio Teijo author non-byline.; Kilpi Terhi author non-byline.; Ollila Terhi author non-byline.; Piltonen Terhi author non-byline.; Harju Terttu author non-byline.; Als Thomas Damm author non-byline.; Luukkaala Tiina author non-byline.; Tuomi Tiinamaija author non-byline.; Lu Tim author non-byline.; Blomster Timo author non-byline.; Hiltunen Timo author non-byline.; Sipilä Timo P. author non-byline.; Southerington Tom author non-byline.; Mäkelä Tomi P. author non-byline.; Laisk Triin author non-byline.; Kiiskinen Tuomo author non-byline.; Mantere Tuomo author non-byline.; Meretoja Tuomo author non-byline.; Palotie Tuula author non-byline.; Salo Tuula author non-byline.; Sistonen Tuuli author non-byline.; Willberg Tytti author non-byline.; Palotie Ulla author non-byline.; Gursoy Ulvi author non-byline.; Julkunen Valtteri author non-byline.; Jokimaa Varpu author non-byline.; Salomaa Veikko author non-byline.; Kosma Veli-Matti author non-byline.; Kosma Veli-Matti author non-byline.; Kurra Venla author non-byline.; Llorens Vincent author non-byline.; Anttonen Vuokko author non-byline.; Zhou Wei author non-byline.; Hu Xinli author non-byline.; Wu Ying author non-byline.; Ding Zhihao author non-byline.;
• Is Part Of: BMJ open. Volume 12:Issue 10(2022)
• Publication Date: 2022-10-05
• Subjects: GENETICS -- EPIDEMIOLOGY -- PUBLIC HEALTH; Medicine -- Research -- Periodicals; 610.72
• DOI: 10.1136/bmjopen-2022-064695
• Languages: English
• ISSNs: 2044-6055

Abstract

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.