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Data Summary

Purpose of the data collection/generation and its relation to the
objectives of the project

FAMILY aims to improve causal understanding and gain prediction power of mental illnesses from the
family context and address key bioethical and social issues raised by the concept of intergenerational
risk transmission and risk prediction.

The specific objectives of the project are:

1. To understand the intergenerational transmission of risk:

  • Estimate the contribution of genetic and environmental routes of intergenerational transmission of risk from parent to offspring throughout the life course.
  • Identify causal factors underlying genetic and environmental routes of risk transmission and resilience.

2. To predict risk of mental illness in a familial context:

  • Identify and validate genetic, epigenetic and brain imaging biomarkers of risk or resilience to mental disease in the family.
  • Develop and validate a multimodal risk prediction model and a normative modelling framework to predict, at the individual level, who is at risk of developing a mental disorder.

3. To create societal impact and end-user engagement:

  • Map and evaluate social and ethical consequences of risk prediction for clinical use.
  • Increase awareness and foster active engagement of families and translate new discoveries to patients and mental healthcare professionals.

Within this framework, the FAMILY consortium will be collecting multimodal human and
animal-model data and analyzing it in order to establish mental disorder risk and resilience
mechanisms as well as risk prediction tools and their ethical aspects.

Specify the types and formats of the data generated/collected.

  1. MRI imaging data: digital (DICOM, NIfTI format).
  2. Blood: biological.
  3. Saliva: biological.
  4. Biological data drawn from biological samples: digital (gene SNPs, miRNA).
  5. Interviews: audio (mp4) or paper.
  6. Questionnaires: paper.
  7. Surveys: digital.

Biological data will be stored at local biobanks. Storage of analogue data will be in locked cabinets at the site where they were originally obtained and will be kept separate from personal data. Analogue and audio data will further be transcribed and digitalised. Afterwards they will be destroyed. Blood and biological samples will be stored in local biobanks. Digital data will be stored locally on secured university servers at the site where they are originally obtained and in a secured digital research environment (DRE) to allow for centralized analyses.

Specify if existing data is being reused and how.

FAMILY will make use of existing data from the population studies and high risk-offspring cohorts detailed in Table 1.

Cohort namePartnerCohort NAvailable dataAdditional Information
Population studies
Gen REMC9778Phenotype,
epigenetics and
Appendix 1a
COPSYCH/COPSACRegion H650Phenotype,
epigenetics and
Appendix 1b
ALSPACUniversity of Bristol15589Phenotype,
Appendix 1c
Appendix 1d
Appendix 1e
UK BiobankNA70000Phenotype,
Appendix 1f
Genetics, MRI
Appendix 1g
Genetics, MRI
Appendix 1h
Genetics, MRI
Appendix 1i
Familial high-risk cohorts
Genetics, MRI
Genetics, MRI
Genetics, MRI
VIARegion H522Phenotype,
epigenetics, MRI

Data origin.

The existing population and high-risk offspring cohort information have various origins as described
in Table 1. The data collection within the family consortium is specified in Table 2

Cohort namePartnerEstimated N to collectTypes of data
BASISFCRB126Phenotype, Genetics,
BASISFIBHGM62Phenotype, Genetics,
LGCHUV150Phenotype, Genetics,
BRIDGEEMC450Phenotype, Genetics,
KBOEMCNAPhenotype, Genetics
MARIOEMCNAPhenotype, Genetics

Data size.

The size of the data cannot be precisely addressed at the moment since the data belongs to specific partners and cohorts. However, the FAMILY consortium is expected to generate a vast quantity of multidimensional data.

Data utility.

This data will be used by members of the consortium in order to elucidate the mechanisms of the intergenerational transmission of mental illness, develop risk assessment tools and study the ethical implications of risk prediction.
Further, the data produced by FAMILY will be employed by other researchers and clinicians to develop and implement ethically informed preventive strategies that strengthen resilience and improve clinical outcomes in individuals at risk.