HEAP is a "toolbox" to share and reuse knowledge

HEAP will provide a safe, efficient, ethical, reproducible, and sustainable data management system built on previous EU investments such as the Horizon 2020 projects B3Africa, RD-Connect, and FP7 BiobankCloud. Its aim is to make pseudonymized data from large-scale population cohorts, including data on samples, from health registries, and from research, safely interoperable and reusable.

FAIR and open data principles

All data in the HEAP Information Commons will be Findable, Accessible, Interoperable and Re-usable (FAIR) and open to the broader research community and policy-makers. HEAP data will comply with national and European ethical and legal frameworks, such as the General Data Protection Regulation (GDPR, Regulation (EU) 2016/679).

Data cohort studies – insights into the links between lifestyle and health and disease

Data to populate the HEAP Information Commons will be sourced from large, population-based cohorts, national health registries, consumer receipts, and wearable sensors. These data, once processed by HEAP, will provide new insights into lifestyle, health and disease history, health-care costs, and mortality.

500 000 women 

140 000 new patients per year 1 million  cervical samples    

The Swedish cervical screening cohort study will evaluate internal exposome factors, such as viruses and bacteria, through analysis of cervical cells. Sweden has pioneered the use of biobank and health registry data in cervical cancer prevention. Its National Clinical Cytology Biobank runs a cervical screening programme for all women aged 23-70 years to detect and remove lesions that could develop into cervical cancer. The biobank will provide samples of healthy tissue, lesions, and cancer, and analyse specimens to identify risk factors for cancer.

HEAP’s role: HEAP will carry out metagenomic and epigenomic analysis on agnostic samples from about 1 million cervical screenings. HEAP will then link the results of these screenings to health registries containing interoperable data on the lifestyle, socioeconomic status, health, health-care costs, diseases and deaths of the Swedish population.

Lead partner: Karolinska Institutet

 1 million women            2 million pregnancies 

The nationwide Finnish Maternity Cohort is an internationally unique cohort. This study has collected biospecimens and registry data from registered pregnancies in Finland since 1983. The data include clinical information from maternity care, data on exposure during fetal life, registry-derived data and biospecimen research data.  

HEAP’s role: HEAP will process cohort data to gain insights into how the exposome affects the health of mothers and babies, and produce actionable knowledge for policy-makers aiming to promote healthy childbearing. HEAP will make this data resource easily accessible to researchers.

Lead partner: Tampere University Hospital (TAUH)

  100 pregnant women

The wearable data collection study uses innovative exposure sensors to monitor the effects of the exposome on 100 women during their pregnancies, with participants recruited from the nationwide Finnish Maternity Cohort. The wearable sensors collect airborne particles and toxic substances, and capture virus particles, bacteria, fungal spores, animal debris, and plant pollens, to investigate how the exposome influences the health of mothers and babies.

The study will be led by Professor Michael Snyder, an associated researcher at Karolinska Institutet who has undertaken pioneering work on the design and development of integrated wearable personal exposome monitoring systems. The wearable data collection project is as an exemplar study, and expands scientific understanding of personal exposome profiling and agnostic identification of environmental risk factors.

HEAP’s role: HEAP enables the entire process: device manufacturing, recruitment of participants, data acquisition, including data streaming from Internet of Things devices and mobile phones, metabolomic analysis of data, and sharing of results.

Lead partner: Karolinska Institutet

 80 000 participants (adolescent boys and girls)

The Finnish community randomized human papillomavirus (HPV) vaccination trial is the largest of its kind in the world, and consists of registry data and biospecimens, including samples of oral gargles and cervical cells from
80 000 adolescents, collected over a 12-year period in four consecutive phases. 

The HPV vaccination cohort study aims to understand the long-term impact of health interventions, by establishing a randomized, stratified intervention cohort. This project will provide data for microbiomic, epidemiological and impact analyses (including serological and nucleic acid samples) and improve understanding of risk factors for cancer and other diseases.

HEAP’s role: HEAP will transform the biospecimens and registry data into an open access resource for exposome research.

Lead partner: Tampere University Hospital (TAUH)

 Up to 10 000 Danish citizens aged 18-70 years

The Consumer Cohort study will model the impact of household consumption on health and disease by collecting receipts from Danish consumers and linking to national health registries.

All Danes have a unique Personal Identification Code (PIC), which will enable HEAP to link individual purchases to health outcomes. Volunteers will be recruited using an electronic informed consent tool, jointly developed by HEAP partners Statens Serum Institut and Karolinska Institutet, that allows citizens to transfer their individual consumer data from private receipt providers to research.

This project will allow HEAP to standardize ways of collecting, storing, enriching, and analysing consumer purchase data (CPD). This will offer a rich source for exposome research and is scalable and transferable to other consumer data sources such as loyalty programmes.

The Consumer Cohort study will guide policy-makers in developing lifestyle communication models and epidemiological surveillance systems. Finally, the long term goal is to help citizens identify and avoid unhealthy products and select healthy alternatives.

HEAP’s role: HEAP will provide end-to-end data processing, including the efficient, ethical, and legally compliant recruitment of volunteers, collection and management of their data, and the generation of insights and knowledge on environmental exposures and their health effects.

Lead partner: Statens Serum Institut (SSI)

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