Maelstrom Research collaborates with a number of study networks and consortia. Below is a list of some the key initiatives on which we are currently working.

For additional information on our partner research networks, visit the Networks section of the Maelstrom Catalogue.

ALSPAC:  Avon Longitudinal Study of Parents and Children

The Avon Longitudinal Study of Parents and Children (ALSPAC), also known as Children of the 90s, is a world-leading birth cohort study. Between April 1991 and December 1992, ALSPAC recruited more than 14,000 pregnant women. These women, their children, and their partners have been followed up intensively over two decades. ALSPAC provides the international research community with a rich resource for the study of the environmental and genetic factors that affect a person’s health and development.

Within the partnership, Maelstrom Research:
  • adapts its tools to build the ALSPAC data warehouse and meet the data curation, storage and dissemination needs of the cohort
  • provides ALSPAC with expert and technical support for study and variable cataloguing.

ATHLOS:  Ageing Trajectories of Health: Longitudinal Opportunities and Synergies

The ATHLOS Project aims to achieve a better understanding of ageing by identifying patterns of healthy ageing trajectories, the determinants of those patterns and the critical points in time when changes in trajectories are produced. The project also investigates timely clinical and public health interventions to optimize healthy ageing. ATHLOS will merge large sets of variables from longitudinal databases (at least 20 longitudinal studies) derived from several European and international studies. The Consortium will create and analyze a harmonized data set that includes the longitudinal studies identified, comprising more than 341,000 subjects.

Within the partnership, Maelstrom Research:
  • provides expert and technical support for study and variable cataloguing as well as data harmonization, integration, and co-analysis
  • guides the implementation and use of the Opal and Mica software and troubleshoots the implementation of the ATHLOS database

CANUE:  Canadian Urban Environmental Health Research Consortium

The Canadian Urban Environmental Health Research Consortium (CANUE) is composed of more than 80 environmental health experts across academia, government, and NGOs. The consortium is creating standardized measures of environmental factors such as air pollution, green space, traffic, noise, weather, and walkability for every neighbourhood in Canada. It also forms a hub for collecting and managing subsequent uses of researcher-created environmental data. By merging such environmental exposure datasets with some of Canada’s largest cohort and health databases, CANUE members will build an unprecedented capacity to study how multiple environmental factors are linked to a wide range of health outcomes.

Within the partnership, Maelstrom Research:
  • provides support for environmental data documentation and linkage with health databases

  • facilitates interoperability between CANUE and Maelstrom Research metadata cataloguing efforts

CARTaGENE

CARTaGENE is a public research platform created to accelerate health research and innovation and support evidence-based decision-making in clinical practice and public health. CARTaGENE consists of both biological samples and health data from 43,000 Québec residents aged between 40 and 69 years.

Within the partnership, Maelstrom Research:
  • collaborated to the development of the CARTaGENE web portal supporting documentation of available data and submission of online data access requests by potential users.

CLSA:  Canadian Longitudinal Study on Aging

The CLSA collects information on the changing biological, medical, psychological, social, lifestyle, and economic aspects of people’s lives in order to understand how, individually and in combination, they have an impact both on the maintenance of health and on the development of disease and disability as people age. The CLSA will follow approximately 50,000 individuals across Canada between 45 and 85 years of age, for at least 20 years. Explore the CLSA study in the Maelstrom Catalogue here.

Within the partnership, Maelstrom Research:
  • has customized its Onyx, Opal, and Mica software to support CLSA data collection, data management, and data dissemination requirements. The Onyx software is being used in the CLSA data collection centre. Opal serves as CLSA's data management platform, while CLSA's data portal is powered by Mica

  • works with CLSA to help facilitate data harmonization (both prospective and retrospective) with other large population-based studies around the world

Cohorts.SE:  Swedish Cohort Consortium

The Swedish Cohort Consortium (Cohorts.se) is a national technical and collaborative infrastructure, aiming to facilitate greater use of Swedish cohorts for world-leading research. Coordination of all Swedish prospective population-based cohorts in a common infrastructure will enable more precise findings and facilitate research on rare diseases and exposures, leading to better utilization of study participants’ data, better return of funders’ investments, and higher benefit to patients and populations.

Within the partnership, Maelstrom Research:
  • supports the implementation of the Cohorts.SE study-and variable-level metadata catalogue
  • helps facilitate data harmonization with other large population-based studies around the world

Constances

Constances is a major French research infrastructure designed to help analyzing a broad range of scientific problems. This large cohort recruited over 200 000 participants, and is designed as a public health and surveillance tool, thanks to the particularly exhaustive nature of the system for collecting and monitoring a great variety of data from a large representative sample of the adult population covered by the General Social Security scheme.

Within the partnership, Maelstrom Research:
  • in collaboration with Epigeny, provides Constances with support for variable cataloguing
  • helps facilitate data harmonization (both prospective and retrospective) with other large population-based studies around the world

COSMIC:  Cohort Studies of Memory in an International Consortium

The Cohort Studies of Memory in an International Consortium ( COSMIC) brings together 37 cohort studies of cognitive ageing from 29 countries across 6 continents, with a combined sample size of over 115,000 individuals. The aim of the collaboration is to facilitate a better understanding of the determinants of cognitive ageing and neurocognitive disorders. This is being achieved by harmonizing data from studies and performing joint or mega-analyses using combined, harmonized data sets.

Within the partnership, Maelstrom Research:
  • inventories COSMIC participating studies and the variables they collect

CPTP:  Canadian Partnership for Tomorrow Project

The CPTP has endeavoured to create Canada’s largest population health research platform. CPTP is a network of five regional cohort studies that collect a wealth of health, lifestyle, environmental, and bio-sample data on 300,000 Canadians. CPTP aims to help researchers investigate the complex factors leading to cancer and other chronic diseases. Explore the CPTP network in the Maelstrom Catalogue here.

Within the partnership, Maelstrom Research:
  • leads data harmonization activities across the five regional CPTP cohorts and documents the entire process using its Opal software 

  • develops a web portal powered by its Mica software, which provides a central point of access for external researchers who wish to use harmonized CPTP data

D2K:  Data to Knowledge Research Group

The Data to Knowledge Research Group (D2K) focuses on methods, tools and infrastructures to support the generation, management, governance, evaluation and analysis of data and information, and their conversion into translatable knowledge and societal impact. The principal areas of interest of the group include: Bioinformatics and Data Science; Epidemiology and Statistics; Social Science and Humanities. D2K leads in the development of DataSHIELD.

Within the partnership, Maelstrom Research:
  • works in close collaboration with D2K in the development of the DataSHIELD technology, an open-source solution for co-analyzing sensitive research data.

EuCanConnect:  A federated FAIR platform enabling large-scale analysis of high-value cohort data connecting Europe and Canada in personalized health

  • Timeline: 10/2018-09/2022

EUCAN-Connect is a Joint Europe-Canada Health Data Flagship Collaboration. The overall objective of the project is to enable large-scale integrated data analysis for personalized prevention and healthcare by enhancing long-term collaboration between European and Canadian mother and child cohorts and research networks. This will be achieved by providing access to a federated data platform supporting dissemination, deposit, curation and analysis of cohort data. In addition, demonstrator projects will help exploring risk models for predominant noncommunicable diseases such as obesity and cardiovascular, metabolic and immune diseases.

Within the partnership, Maelstrom Research:
  • collaborates to the development of the EUCAN-Connect common metadata model aimed at leveraging interoperability across existing ontologies and catalogues
  • builds on its existing software and expertise to support data harmonization across participating cohorts.

EUCanShare:  An EU-Canada joint infrastructure for next-generation multi-Study Heart research

EUCAN-Share is a Joint Europe-Canada Health Data Flagship Collaboration. The euCanSHare project proposes to leverage two complementary initiatives in Canada (CAHHM) and Europe (BiomarCaRE) to develop a robust ecosystem that will promote the responsible exchange of data and demonstrate the potential for cardiovascular research in personalised medicine. The project aims to enhance and standardize data deposition, harmonization and sharing procedures. It integrates more than 35 Canadian and European cohorts that make up over 1 million records. A number of these cohorts include -omics (genomics, transcriptomics, metabolomics), cardiac imaging and clinical data.

Within the partnership, Maelstrom Research:
  • collaborates to the development of the data cataloguing and harmonisation infrastructures of the project.

Helti:  Healthy Life Trajectories Initiative

The Healthy Life Trajectories Initiative (HeLTI) aims to generate evidence that will inform national policy and decision-making for the improvement of health and the prevention of non-communicable diseases (NCDs). The initiative leverages prospective harmonization and comparative analysis across four international cohorts in Canada, China, India, and South Africa to evaluate the impact of interventions along the life course from pre-conception to childhood.

Within the partnership, Maelstrom Research:
  • support selection and definition of the subsets of variables forming the HeLTI core data (HeLTI DataSchema) to be generated by all studies

IALSA:  Integrative Analysis of Longitudinal Studies of Aging

The IALSA collaborative network aims to coordinate interdisciplinary, transnational research aimed at understanding within-person aging-related changes in cognitive and physical capabilities, health, personality, and well-being. Comprising investigators from 109 longitudinal aging studies, IALSA undertakes multi-cohort research to permit the evaluation of the replicability and generalizability of results across cohorts and countries. Explore the IALSA network in the Maelstrom Catalogue here.

Within the partnership, Maelstrom Research:
  • inventories IALSA participating studies and the variables they collect

  • received support from IALSA for the development of software and harmonization approaches

InterConnect:  Global data for diabetes and obesity research

The overall goal of InterConnect is to establish a global network that will facilitate the coordination of population research to explain the differences in the risk of type 1 diabetes, type 2 diabetes, and obesity between populations; and, in particular, what explains the excess risk of diabetes in certain specific high-risk populations. InterConnect aims to establish mechanisms for identifying and classifying studies and the data that they hold, and to create a forum for the harmonization of methods as a foundation for optimizing the use of existing data to study gene-environment interactions.

Within the partnership, Maelstrom Research:
  • helped to implement the InterConnect study catalogue

  • provided technical support to harmonize data and implement data infrastructures supporting DataSHIELD analysis.

MINDMAP:  Promoting mental well-being and healthy ageing in cities

The MINDMAP consortium aims to identify the opportunities offered by the urban environment to promote mental well-being and cognitive function in older individuals. This project brings together longitudinal studies in European and North American cities to explore the causal pathways and multi-level interactions between the urban environment and the social, behavioural, psychosocial, and biological determinants of mental health and cognitive function in aging populations. Explore the MINDMAP network in the Maelstrom Catalogue here.

Within the partnership, Maelstrom Research:
  • supports the data harmonization activities of the MINDMAP consortium

  • provides support in establishing an infrastructure for the co-analysis of data across participating cohort studies

NEAR:  National E-lnfrastructure for Aging Research

The National E-infrastructure for Aging Research (NEAR) coordinates the existing databases from major population-based longitudinal studies on aging and health in Sweden. The aims of NEAR are to build and run an infrastructure integrating studies to promote and facilitate aging research in Sweden, to increase international exchange and collaboration, and to enhance research quality and generalizability of research findings. The ultimate goal is to identify sustainable intervention strategies for better health and more effective care of elderly populations.

Within the partnership, Maelstrom Research:
  • supports the implementation of the NEAR study-and variable-level metadata catalogue
  • provides expert and technical input in data harmonization and database implementation

P3G2:  Policy Partnerships Project for Genomic Governance

P3G2 is a not-for-profit corporation dedicated to developing and supporting policy, ethical and governance frameworks of biobanks, genomic research databases and other similar health and social research infrastructures so as to optimize cross-border access and use. P3G2 provides expert guidance, training and assistance in the development of policy documents to support researchers in managing important ethical aspects of their projects. As an international network and policy think tank, P3G2  support multi-jurisdictional research initiatives and meetings to address emerging policy and ethical issues.

Within the partnership, Maelstrom Research:
  • was created as an ancillary research program of P3G. The different components of the Maelstrom Research platform were initially developed under the P3G consortium.

ReACH:  Research Advancement through Cohort Cataloguing and Harmonization

ReACH is a Maelstrom Research–led project aiming to provide the Developmental Origins of Health and Disease (DOHaD) community with the means to leverage and carry out cutting-edge research. Through the development of a comprehensive web-based catalogue of Canadian pregnancy and birth cohorts and the implementation of a pan-Canadian data harmonization platform, ReACH promotes timely access to research data and samples, increases the potential to share and integrate data across cohorts, and encourages a multidisciplinary and collaborative approach to DOHaD research, both in Canada and internationally. Explore the ReACH network in the Maelstrom Catalogue here.

Within the partnership, Maelstrom Research:
  • inventories ReACH participating studies and the variables they collect in the Maelstrom Catalogue

  • implements a harmonization platform using its Opal software to facilitate integration and co-analysis of data across pregnancy and birth cohorts

  • engages with the DOHaD community to leverage usage of the ReACH catalogue and harmonization platform

The BETTER project:  Behaviours, therapies, technologies and hypoglycemic risk in type 1 diabetes

The BETTER (Behaviours, therapies, technologies and hypoglycemic risk in type 1 diabetes) project, aims to develop a digital and educational platform that helps to reduce the risk of hypoglycemia for people with type 1 diabetes. The platform will support the creation of a registry of Canadian patients with Type 1 diabetes (initial phase: 12,000 to 15,000 patients), to better characterize the causes, experiences and consequences of hypoglycemia. The platform also aims to optimize use of new technological devices (e.g., insulin pump) and treatments (new types of insulin and glucagon formulas) reducing risk of hypoglycemia.

Within the partnership, Maelstrom Research:
  • supports data collection and management by providing technical expertise and ensuring implementation and maintenance of the data infrastructure.