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 name

Partner

Cohort N

Available data

Additional Information

Population studies

Gen R	EMC	9778	Phenotype, Genetics, epigenetics and MRI	Appendix 1a
COPSYCH/COPSAC	Region H	650	Phenotype, Genetics, epigenetics and MRI	Appendix 1b
ALSPAC	University of Bristol	15589	Phenotype, Genetics, epigenetics	Appendix 1c
MoBa	NIPH	114500	Phenotype, Genetics, epigenetics	Appendix 1d
MCS	UCL	18818	Phenotype, Genetics	Appendix 1e
UK Biobank	NA	70000	Phenotype, Genetics	Appendix 1f
ABCD	UMC	11878	Phenotype, Genetics, MRI	Appendix 1g
HCP	NA	1206	Phenotype, Genetics, MRI	Appendix 1h
PNC	NA	9500	Phenotype, Genetics, MRI	Appendix 1i

Familial high-risk cohorts

BRIDGE	EMC	140	Phenotype, Genetics
KBO	EMC	500	Phenotype, Genetics
BASIS	FCRB	60	Phenotype, Genetics, MRI
BASIS	FIBHGM	60	Phenotype, Genetics, MRI
LG	CHUV	389	Phenotype, Genetics, MRI
VIA	Region H	522	Phenotype, Genetics, 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 name	Partner	Estimated N to collect	Types of data
BASIS	FCRB	126	Phenotype, Genetics, MRI
BASIS	FIBHGM	62	Phenotype, Genetics, MRI
LG	CHUV	150	Phenotype, Genetics, MRI
BRIDGE	EMC	450	Phenotype, Genetics, MRI
KBO	EMC	NA	Phenotype, Genetics
MARIO	EMC	NA	Phenotype, 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.