Document is current

Article History

Received: 8 December 2024

Revised: 15 February 2026

Accepted: 10 March 2026

First Online: 2 April 2026

Competing interests

: The author declares no competing interests.

: Prior to the start of HELIX, all cohorts on which HELIX is based had been in existence for some years, had undergone the required evaluation by national ethics committees and had obtained all the required permissions for their cohort recruitment and follow-up visits. Each cohort also confirmed that relevant informed consent and approval were in place for secondary use of data from pre-existing data. The work in HELIX was covered by new ethics approvals in each country, and at enrolment in the HELIX sub-cohort and panel studies participants were asked to sign an informed consent form for the specific HELIX work including clinical examination and biospecimen collection and analysis. An Ethics Task Force was established to support the HELIX project on ethical issues, for advice on the project’s ethical compliance, identification and alerting to changes in legislation where applicable. Specific procedures are in place within HELIX to safeguard the privacy of study subjects and confidentiality of data. First, any reported study results pertain to analyses of aggregate data; no variables or combination of variables that can identify an individual will be associated with any published or unpublished report of this study. Primary databases with personal information (such as geocodes, dates, questionnaires or health outcomes) have been stored on separate computers with personal identifiers removed. Subjects are identified by a unique study number, linking all basic data required for the study. The master key file linking the study numbers with personal identifiers is maintained in each cohort. For the dataset analysis, all information that enables identification of an individual (dates, geocodes, etc) is removed before distribution of datasets to the researchers. All data exchanges will adhere to the most up-to-date EU and national data protection regulations.