Project

Determinants of functional decline, multimorbidity and neurodegenerative diseases: a triangulation approach

Principal Investigator : Dr Séverine Sabia
Approved Research ID : 96856
https://www.ukbiobank.ac.uk/enable-your-research/approved-research/determinants-of-functional-decline-multimorbidity-and-neurodegenerative-diseases-a-triangulation-approach
Approval date : March 3rd 2023

Lay summary

Longer life expectancy has led to a greater number of people being at risk of functional decline and conditions such as multimorbidity or neurodegenerative disease that increase the risk of disability at older ages. The challenge from a public health perspective is to identify determinants of maintenance of functional capacity as long as possible to reduce the risk and postpone disability onset. In this context, this project aims to identify determinants of functional decline, multimorbidity, and neurodegenerative disease as well as factors involved in progression from these health conditions to death.
Data from the UK Biobank cohort will be used to examine the associations of sociodemographic, behavioural, and health-related factors with change in cognitive, physical, and sensory function over time and risk of onset of multimorbidity, neurodegenerative disease and their progression to death. In order to examine the consistency of findings in different sub-groups, these associations will also be investigated in groups defined by sociodemographic factors (age, sex, ethnicity, education) or health characteristics (obesity, hypertension, diabetes, frailty status). We will also examine the directionality (is it the exposure that influences the health outcome or the reverse?) and the biological plausibility of the associations found. Mendelian randomisation will be used to examine the causal role of exposure in health outcomes. The biological plausibility of the association will be tested by examining whether microvascular function and metabolites play a role in the identified associations.
Taken together, this project will use a comprehensive approach to allow triangulation of findings and provide robust knowledge for future evidence-based personalised prevention interventions.

S Sabia, A Singh-Manoux, A Fayosse, A Dugravot, B Landre, C Ben-Hassen, F van der Heide, G Silva, I Meneghel Danilevicz, S Vidil, L Jacob, M Machado

Legal information

Data Controler
We inform you that the processing of your data is the responsibility of the Institut national de la santé et de la recherche médicale (Inserm), which is responsible for processing your personal data located at 101 rue de Tolbiac, 75 013 Paris – www.inserm.fr.

Legal basis for processing
The processing of personal data necessary for the implementation of this study is part of the public interest mission that Inserm has been entrusted with and requires the processing of personal health data for scientific research purposes.

Categories of data concerned by processing
The personal data processed will be strictly limited and necessary for the purpose of the project. This includes the following categories: socio-economic and behavioral data, health-related factors, psychosocial, hereditary, metabolic factors, imaging data, and health outcomes.

Recipients or categories of recipients of personal data
As part of this research, the data will be made available to the principal investigator, Inserm research director of the EpiAgeing team, UMR 1153 CRESS, Paris, France. This is necessary to enable the scientific team in charge of the project to carry out the statistical analyses.

Data retention period
The data will be stored in the secure information systems of UMR 1153 CRESS for 6 years until the end of the project, i.e. March 2029. They will then be permanently deleted.

Data Protection Rights
In accordance with the General Data Protection Regulation (Regulation (EU) 2016/679) and the French Data Protection Act (Law no. 78-17), you are entitled to :

  • the right to object to the processing of your data at any time. If you exercise this right, your participation in the study may be terminated.
  • the right to limit data processing: the right to temporarily block the use of your data: no operations may be performed on it.
  • the right to have your data deleted.

Regarding access rights, all participants joined the UK Biobank with the explicit understanding (as stated in the information leaflet and consent form) that there would be no feedback on the information found about them as a result of the use of their data.

Data Protection Officer
If you have any difficulty in exercising your rights, you can contact :
For the cohort, the UK Biobank Data Protection Officer by e-mail (dpo@ukbiobank.ac.uk) or by post (The Data Protection Officer, UK Biobank, Units 1-2 Spectrum Way, Adswood, Stockport, SK3 0SA).
For the project, the Inserm Data Protection Officer by e-mail (dpo@inserm.fr) or by post (Déléguée à la protection des données de l’Inserm, 101 rue de Tolbiac, 75 013 Paris).

If you are unable to exercise your Data Protection Rights as set out above, you also have the right to send a complaint :
For the cohort, to the UK’s data protection authority – the Information Commissioner’s Office (“ICO”) via the link https://ico.org.uk/make-a-complaint/data-protection-complaints/data-protection-complaints/.
For the project, to the Commission Nationale de l’Informatique et des Libertés (CNIL), 3 Place de Fontenoy – TSA 80715, 75334 PARIS CEDEX 07 or online at https://www.cnil.fr.

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