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ABSTRACT
ObjectivesThe complex interaction between lifestyle, behaviours, genetic factors and the social and physical environment have a fundamental role in modulating risk and/ or progression of health outcomes, especially cancer. To address this complexity, access to large-scale cohorts involving hundreds of thousands of participants and collecting comprehensive and valuable information are required. In the real world however, attaining adequate statistical power presents a major challenge.
Retrospective data harmonization and integration across multiple cohort studies has been shown to be an effective analytical approach to attaining statistical power, with the potential to support population health research and policy related questions and improve our understanding of the complex factors affecting health outcomes.
ApproachLarge cohorts, with at least 50,000 participants, initiated in countries all over the world, focused on innovative research on cancer and other chronic diseases were invited to participate in this retrospective data harmonization initiative. Cohorts shared their comprehensive metadata related to their study content and design. Almost 150 variables, selected for their relevance to be part of a generic set of information useful for a broad range of research question, were assessed for their harmonization potential and made available on an online searchable study catalogue. Lastly, a proof of concept research question on the retrospective harmonized data was conducted and aimed to investigate methods to analyze individual patient data from multiple studies by studying the determinants associated with age at menopause.
ResultsEight cohorts from multiple countries shared their comprehensive metadata related to their study content and design, resulting in over 2 million study participants. Of the 150 potential variables, the majority of them were harmonizable for co-analysis. The proof of concept research question, applied to these variables generated interesting results, widely supported by other research on this topic, found in the literature. This work demonstrates the value of retrospective data harmonization and integration to be an effective analytical approach to attaining statistical power.
The searchable study catalogue, available online for researchers to use in their own international research projects offers a new innovative tool for potential co-analysis of similar measures collected by separate cohort studies.
ConclusionRetrospective harmonization offers an innovative approach to optimize use of existing research data with increased statistical power.

euCanSHare deliverable D4.1 reporting on the opal software integration to euCanSHare Executive Summary: In order to support the data harmonization process to be achieved within euCanSHare as well as proper documentation of the harmonized datasets generated, it is essential to implement a data and metadata documentation, processing and management system. The OBiBa software suite (Opal, Mica and Agate) and harmonization and cataloguing resources (harmonization guidelines and metadata standards) developed by Maelstrom Research are used as key elements of the EuCanSHare system. OBiBa software infrastructures are implemented in Spain, Finland, Germany and Canada to form the EuCanSHare harmonization platform. The platform will be pilot tested in 2019-2020 and, where required, the software will be customized to serve the evolving needs of EuCanSHare. The deliverable is a software and this report is the written description and presentation of the software and its implementation in different environments to support EuCanSHare activities. ; This deliverable has been produced in the context of the euCanSHare ("An EU-Canada joint infrastructure for next-generation multi-Study Heart research") Research and Innovation Action, funded by the European Union's Horizon 2020 programme (grant agreement No 825903), the Canadian Institutes of Health Research (CIHR) and the Fonds de recherche du Québec – Santé under the framework of Canada‐EU Commission Flagship Collaboration for Human data storage, integration and sharing.

Background Despite earlier doubts, a string of recent successes indicates that if sample sizes are large enough, it is possible—both in theory and in practice—to identify and replicate genetic associations with common complex diseases. But human genome epidemiology is expensive and, from a strategic perspective, it is still unclear what 'large enough' really means. This question has critical implications for governments, funding agencies, bioscientists and the tax-paying public. Difficult strategic decisions with imposing price tags and important opportunity costs must be taken.

The International Network of Twin Registries (INTR) aims to foster scientific collaboration and promote twin research on a global scale by working to expand the resources of twin registries around the world and make them available to researchers who adhere to established guidelines for international collaboration. Our vision is to create an unprecedented scientific network of twin registries that will advance knowledge in ways that are impossible for individual registries, and includes the harmonization of data. INTR will also promote a broad range of activities, including the development of a website, formulation of data harmonization protocols, creation of a library of software tools for twin studies, design of a search engine to identify research partners, establishment of searchable inventories of data and biospecimens, development of templates for informed consent and data sharing, organization of symposia at International Society of Twin Studies conferences, support for scholar exchanges, and writing grant proposals.

Biobanks can have a pivotal role in elucidating disease etiology, translation, and advancing public health. However, meeting these challenges hinges on a critical shift in the way science is conducted and requires biobank harmonization. There is growing recognition that a common strategy is imperative to develop biobanking globally and effectively. To help guide this strategy, we articulate key principles, goals, and priorities underpinning a roadmap for global biobanking to accelerate health science, patient care, and public health. The need to manage and share very large amounts of data has driven innovations on many fronts. Although technological solutions are allowing biobanks to reach new levels of integration, increasingly powerful data-collection tools, analytical techniques, and the results they generate raise new ethical and legal issues and challenges, necessitating a reconsideration of previous policies, practices, and ethical norms. These manifold advances and the investments that support them are also fueling opportunities for biobanks to ultimately become integral parts of health-care systems in many countries. International harmonization to increase interoperability and sustainability are two strategic priorities for biobanking. Tackling these issues requires an environment favorably inclined toward scientific funding and equipped to address socio-ethical challenges. Cooperation and collaboration must extend beyond systems to enable the exchange of data and samples to strategic alliances between many organizations, including governmental bodies, funding agencies, public and private science enterprises, and other stakeholders, including patients. A common vision is required and we articulate the essential basis of such a vision herein.

We herein outline the rationale for a Swedish cohort consortium, aiming to facilitate greater use of Swedish cohorts for world-class research. Coordination of all Swedish prospective population-based cohorts in a common infrastructure would enable more precise research findings and facilitate research on rare exposures and outcomes, leading to better utilization of study participants' data, better return of funders' investments, and higher benefit to patients and populations. We motivate the proposed infrastructure partly by lessons learned from a pilot study encompassing data from 21 cohorts. We envisage a standing Swedish cohort consortium that would drive development of epidemiological research methods and strengthen the Swedish as well as international epidemiological competence, community, and competitiveness. ; Special issue