Updating the study protocol: Insight 46 – a longitudinal neuroscience sub-study of the MRC National Survey of Health and Development – phases 2 and 3
Heidi Murray-Smith,
Suzie Barker,
Frederik Barkhof,
Josephine Barnes,
Thomas M. Brown,
Gabriella Captur,
Molly R.E.Cartlidge,
David M. Cash,
William Coath,
Daniel Davis,
John C. Dickson,
James Groves,
Alun D. Hughes,
Sarah-Naomi James,
Ashvini Keshavan,
Sarah E. Keuss,
Josh King-Robson,
Kirsty Lu,
Ian B. Malone,
Jennifer M. Nicholas,
Alicja Rapala,
Catherine J. Scott,
Rebecca Street,
Carole H. Sudre,
David L. Thomas,
Andrew Wong,
Selina Wray,
Henrik Zetterberg,
Nishi Chaturvedi,
Nick C. Fox,
Sebastian J. Crutch,
Marcus Richards,
Jonathan M. Schott
Affiliations
Heidi Murray-Smith
Dementia Research Centre, Queen Square Institute of Neurology, University College London
Suzie Barker
Dementia Research Centre, Queen Square Institute of Neurology, University College London
Frederik Barkhof
Department of Radiology and Nuclear Medicine, Amsterdam University Medical Center
Josephine Barnes
Dementia Research Centre, Queen Square Institute of Neurology, University College London
Thomas M. Brown
Dementia Research Centre, Queen Square Institute of Neurology, University College London
Gabriella Captur
MRC Unit for Lifelong Health and Ageing at UCL, Department of Population Science & Experimental Medicine, UCL Institute of Cardiovascular Science, University College London
Molly R.E.Cartlidge
Dementia Research Centre, Queen Square Institute of Neurology, University College London
David M. Cash
Dementia Research Centre, Queen Square Institute of Neurology, University College London
William Coath
Dementia Research Centre, Queen Square Institute of Neurology, University College London
Daniel Davis
MRC Unit for Lifelong Health and Ageing at UCL, Department of Population Science & Experimental Medicine, UCL Institute of Cardiovascular Science, University College London
John C. Dickson
Institute of Nuclear Medicine, University College London Hospitals
James Groves
Dementia Research Centre, Queen Square Institute of Neurology, University College London
Alun D. Hughes
MRC Unit for Lifelong Health and Ageing at UCL, Department of Population Science & Experimental Medicine, UCL Institute of Cardiovascular Science, University College London
Sarah-Naomi James
MRC Unit for Lifelong Health and Ageing at UCL, Department of Population Science & Experimental Medicine, UCL Institute of Cardiovascular Science, University College London
Ashvini Keshavan
Dementia Research Centre, Queen Square Institute of Neurology, University College London
Sarah E. Keuss
Dementia Research Centre, Queen Square Institute of Neurology, University College London
Josh King-Robson
Dementia Research Centre, Queen Square Institute of Neurology, University College London
Kirsty Lu
Dementia Research Centre, Queen Square Institute of Neurology, University College London
Ian B. Malone
Dementia Research Centre, Queen Square Institute of Neurology, University College London
Jennifer M. Nicholas
Department of Medical Statistics, London School of Hygiene and Tropical Medicine
Alicja Rapala
MRC Unit for Lifelong Health and Ageing at UCL, Department of Population Science & Experimental Medicine, UCL Institute of Cardiovascular Science, University College London
Catherine J. Scott
Dementia Research Centre, Queen Square Institute of Neurology, University College London
Rebecca Street
Dementia Research Centre, Queen Square Institute of Neurology, University College London
Carole H. Sudre
Dementia Research Centre, Queen Square Institute of Neurology, University College London
David L. Thomas
Neuroradiological Academic Unit, UCL Queen Square Institute of Neurology, University College London
Andrew Wong
MRC Unit for Lifelong Health and Ageing at UCL, Department of Population Science & Experimental Medicine, UCL Institute of Cardiovascular Science, University College London
Selina Wray
Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology
Henrik Zetterberg
Department of Neurodegenerative Disease, UCL Queen Square Institute of Neurology
Nishi Chaturvedi
MRC Unit for Lifelong Health and Ageing at UCL, Department of Population Science & Experimental Medicine, UCL Institute of Cardiovascular Science, University College London
Nick C. Fox
Dementia Research Centre, Queen Square Institute of Neurology, University College London
Sebastian J. Crutch
Dementia Research Centre, Queen Square Institute of Neurology, University College London
Marcus Richards
MRC Unit for Lifelong Health and Ageing at UCL, Department of Population Science & Experimental Medicine, UCL Institute of Cardiovascular Science, University College London
Jonathan M. Schott
Dementia Research Centre, Queen Square Institute of Neurology, University College London
Abstract Background Although age is the biggest known risk factor for dementia, there remains uncertainty about other factors over the life course that contribute to a person’s risk for cognitive decline later in life. Furthermore, the pathological processes leading to dementia are not fully understood. The main goals of Insight 46—a multi-phase longitudinal observational study—are to collect detailed cognitive, neurological, physical, cardiovascular, and sensory data; to combine those data with genetic and life-course information collected from the MRC National Survey of Health and Development (NSHD; 1946 British birth cohort); and thereby contribute to a better understanding of healthy ageing and dementia. Methods/Design Phase 1 of Insight 46 (2015–2018) involved the recruitment of 502 members of the NSHD (median age = 70.7 years; 49% female) and has been described in detail by Lane and Parker et al. 2017. The present paper describes phase 2 (2018–2021) and phase 3 (2021–ongoing). Of the 502 phase 1 study members who were invited to a phase 2 research visit, 413 were willing to return for a clinic visit in London and 29 participated in a remote research assessment due to COVID-19 restrictions. Phase 3 aims to recruit 250 study members who previously participated in both phases 1 and 2 of Insight 46 (providing a third data time point) and 500 additional members of the NSHD who have not previously participated in Insight 46. Discussion The NSHD is the oldest and longest continuously running British birth cohort. Members of the NSHD are now at a critical point in their lives for us to investigate successful ageing and key age-related brain morbidities. Data collected from Insight 46 have the potential to greatly contribute to and impact the field of healthy ageing and dementia by combining unique life course data with longitudinal multiparametric clinical, imaging, and biomarker measurements. Further protocol enhancements are planned, including in-home sleep measurements and the engagement of participants through remote online cognitive testing. Data collected are and will continue to be made available to the scientific community.
