In addition to methods and software development, Maelstrom Research engages in collaborations with study networks and consortia to create interactive study catalogues, generate harmonized datasets and develop data infrastructures allowing efficient and secure co-analysis of data across studies. Study networks and consortia collaborating with Maelstrom Research are typically either interested in:

  1. Gathering standardized information on their member studies to support networking and facilitate emergence of multi-centre research initiatives; or
  2. in achieving very specific projects for which cross-study analysis of harmonized data is required.

Below is a list of some of the key partnerships we have developed to date. For additional information on partner networks, visit the Networks section of the Maelstrom Repository.

Current partnerships

IALSA:  Integrative Analysis of Longitudinal Studies of Aging

What is IALSA? The Integrative Analysis of Longitudinal Studies of Aging (IALSA) collaborative network was formally established in 2005 for the coordination of interdisciplinary, cross-national research aimed at the integrative understanding of within-person aging-related changes in cognitive and physical capabilities, health, personality, and well-being. It is comprised of investigators associated with over 80 longitudinal studies on aging. These population-based and longitudinal studies permit the evaluation of how factors across the lifespan determine and moderate the risk and progression of cognitive impairment and provide a basis for early detection of neurodegenerative disorders such as dementia. IALSA undertakes analysis projects which include multiple longitudinal studies to permit the evaluation of the replicability and generalizability of results across cohorts and countries. Explore the IALSA network in the Repository section of our website here.

Partnership details:
  • IALSA provides core funding for the development of different components of the Maelstrom Platform
  • Maelstrom documents IALSA member studies and the variables they collect in the Maelstrom Repository. This work allows the identification of studies with comparable measures and potential for data harmonization and pooling
  • IALSA provides support and scientific input for the development of the Harmonization Methods Library

CPTP:  Canadian Partnership for Tomorrow Project

What is CPTP? The Canadian Partnership for Tomorrow Project (CPTP) has endeavored to create the largest population cohort in Canada. CPTP is a network of five regional cohort studies — the Alberta Tomorrow Project, Atlantic PATH, the BC Generations Project, the Ontario Health Study and Quebec’s CARTaGENE — that work together in the aim of recruiting 300 000 Canadians and track them over decades. CPTP aims to build a long-term pan-Canadian data platform which researchers may use to correlate genetic, environmental, occupational, lifestyle and socio-economic factors with disease outcomes in order to identify patterns to explain some of the causes of cancer and related chronic diseases such as diabetes and heart and lung disease. Explore the CPTP network in the Repository section of our website here.

Partnership details:
  • Maelstrom is responsible for harmonizing the data collected by the five regional cohorts and compiling standard documentation on the harmonization process: harmonization decisions made, data processing algorithms, and data dictionaries for harmonized variables
  • Maelstrom is developing a central web portal which will provide a single point of access for harmonized data to external researchers looking to make use of CPTP data

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

What is MINDMAP? The MINDMAP consortium aims to identify the opportunities offered by the urban environment for the promotion of mental wellbeing and cognitive function of older individuals in Europe. This project brings together longitudinal studies across cities in Europe, the US and Canada 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. A database of urban cohorts is being created using data harmonization and integration processes developed by Maelstrom.

Partnership details:
  • Maelstrom participates in the data harmonization activities of the MINDMAP consortium, specifically with regards to harmonizing cohort survey data
  • Maelstrom also provides support in establishing an infrastructure for co-analysis of data across population registries and participating cohort studies

CHPT:  Cross-cohort Harmonization Project for Tomorrow

  •  Project timeline: 07/2015 – 03/2017

What is CHPT? The Cross-cohort Harmonization Project for Tomorrow (CHPT) aims to leverage collaborations across large population-based cohorts and to facilitate interdisciplinary, cross-national research on the determinants and etiology of cancer. The network provides tools and methods supporting data harmonization and integration between the Canadian Partnership for Tomorrow Project (CPTP) and other Canadian and international cohorts. Besides the development of a study catalogue that describes cohorts’ profile and variables collected through each wave, a number of research programs will be conducted to answer questions related to data harmonization.

CLSA:  Canadian Longitudinal Study on Aging

What is CLSA? The Canadian Longitudinal Study on Aging (CLSA) is a large, national, long-term study that will follow approximately 50,000 men and women between the ages of 45 and 85 for at least 20 years. The study will collect information on the changing biological, medical, psychological, social, lifestyle and economic aspects of people’s lives. These factors will be studied in order to understand how, individually and in combination, they have an impact in both maintaining health and in the development of disease and disability as people age. Explore the CLSA study in the Repository section of our website here.

Partnership details:
  • Maelstrom 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 CLSA data collection centre, Opal serves as CLSA's data management platform while CLSA's data portal is powered by Mica
  • Maelstrom also works with CLSA to help facilitate data harmonization (both prospective and retrospective) with other large population-based studies around the world

P3G:  Public Population Project in Genomics and Society

What is P3G? The Public Population Project in Genomics and Society (P3G) is a not-for-profit consortium that provides the international research community with access to expertise, resources and innovative tools for health and social sciences research. P3G works with researchers from around the world to: (1) encourage collaboration between researchers and biobankers; (2) promote harmonization of data; (3) optimize the design, set-up and research activities of studies, biobanks, research databases and other similar health and social research infrastructures; and (4) facilitate the transfer of knowledge.

Partnership details:
  • Maelstrom Research was created as an independent research program of the Public Population Project in Genomics and Society (P3G) in 2012. The different components of the Maelstrom Platform were initially developed under the P3G consortium

BBMRI-LPC:  Biobanking and Biomolecular Resources Research Infrastructure – Large Prospective Cohorts

What is BBMRI-LPC? Biobanking and Biomolecular Resources Research Infrastructure - Large Prospective (BBMRI-LPC) is one of the largest biobanking networks in Europe aiming to facilitate scientists’ access to large prospective study datasets on human health and disease. BBMRI-LPC aims to facilitate multinational research projects and increase the utilization of large sample collections in research on human health by improving harmonization, providing solutions for transnational access and networking.

Partnership details:
  • Under the leadership of the International Agency for research on Cancer (IARC), the BBMRI-LPC network is creating an inventory of data collected by member studies using Mica
  • IARC/BBMRI-LPC also conducted a formal evaluation of Maelstrom software for data harmonization projects

InterConnect:  a global initiative on diabetes gene-environment interaction

What is InterConnect? The overall goal of InterConnect is to establish a global network that will facilitate the co-ordination of population research on the interaction between genetic and environmental factors in the aetiology of obesity and diabetes. InterConnect aims to establish mechanisms for identification and classification of studies and the data that they hold and create a forum for harmonization of methods as a foundation for optimizing the use of existing data for the study of gene-environment interaction. This project will create the foundation for research to explain the difference 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.

Partnership details:
  • Maelstrom helps the InterConnect network document studies participating in its network through a standardized study catalogue powered by Mica
  • Based on research questions identified by the consortium, Maelstrom will help InterConnect researchers harmonize data using Opal and set up a federated data infrastructure to securely co-analyze harmonized datasets across participating studies through DataSHIELD

SPIRIT:  Sino-Quebec Perinatal Initiative in Research and Information Technology

  •  Project timeline: 04/2014 – 03/2017

What is SPIRIT? The Sino-Quebec Perinatal Initiative in Research and Information Technology (SPIRIT) is a collaborative network for research about intra-uterine determinants of child health and development and perinatal health services in Quebec and Shanghai, China. The overall aims of this network are to harmonize pregnancy and birth cohort data for the 3D ((Découvrir, Développer, Devenir) study, the Maternal-Infant Research on Environmental Chemicals (MIREC) study and Shanghai Birth Cohort (SBC); to establish a collaborative research network on the topic of intra-uterine determinants of child health and development and on perinatal health services in Quebec and Shanghai (China); to establish an infrastructure of knowledge transfer and application between the partners and users of the network leading to updated guidelines, health policies and knowledge transfer activities in clinical practice; and to reinforce the strategic positioning of academic and industrial partners in Quebec, China and internationally for providing access to new markets and expertise. Explore the SPIRIT network in the Repository section of our website here.

Partnership details:
  • Maelstrom provides support to SPIRIT through development of a standardized study catalogue using the Mica software and through the implementation of a harmonization and federated data analysis platform using Opal and DataSHIELD

CDIC:  Canadian Data Integration Centre

What is CDIC? The Canadian Data Integration Centre is a strategic partnership between CARTaGENE, Maelstrom Research, and the Ontario Institute for Cancer Research. CDIC provides bioinformatics support to genomic researchers by providing the software and analytic systems to collect and harmonize data, analyze it and electronically publish the results. Among its services, CDIC assists in the design, collection and analysis of human genomic, clinical and phenomic data, harmonization of data from multiple sources, and development of integrative data portals to permit researchers and other clients to effectively mine the data. It works with other large-scale projects, delivering client-oriented data transfer services that are customizable to researchers’ needs.

Partnership details:
  • CDIC permits to develop Maelstrom Research tools to better support harmonization and co-analysis of genomic data.
  • Maelstrom Research provides data harmonization and integration services to CDIC clients.

External Users

What are External Users? Additional studies, projects or organizations are currently using, or have used, software developed by our team to support their activities.

Individual studies using software to collect, manage, or disseminate information about data and samples collected:

  • IMPPC (Institute de Medicina Predictiva i Personalitzada del Cancer) Biobank (Spain).
  • Cartagene (Canada).

Organizations using software to manage or harmonize data:

  • Ontario Brain Institue (Canada)
  • Ontario Institute for Cancer Research (Canada)
  • NeuroDevNet (Canada)

Organizations using software to offer data management, harmonization or dissemination services:

  • Biskit (United Kingdom)
  • The hyve (The Netherlands)
  • WESTAT (United States)

Past partnerships

BioSHaRE:  Biobank Standardization and Harmonization for Research Excellence in the European Union

What is BioSHaRE? Biobank Standardization and Harmonization for Research Excellence in the European Union (BioSHaRE) is a consortium of leading biobanks and international researchers from all domains of biobanking science. The mission of BioSHaRE is to ensure the development of harmonized measures and standardized computing infrastructures enabling the effective pooling of data and key measures of life-style, social circumstances and environment, as well as critical sub-components of the phenotypes associated with common complex diseases. BioSHaRE works towards the development of harmonization and standardization tools, implementation of these tools and demonstration of their applicability. Explore the BioSHaRE network in the Repository section of our website here.

Partnership details:
  • BiosHaRE provides core funding for the development of the different components of the Maelstrom Platform
  • The Maelstrom open source software is used within the BioSHaRE research program to catalogue participating population-based studies across Europe, harmonize data collected by these studies, and set up a federated database infrastructure allowing the use of DataSHIELD to analyze data
  • Being one of the first consortium to make use of Maelstrom software, BioSHaRE acts as a pilot project for Maelstrom’s data harmonization and federated data analysis infrastructure and has helped optimize all three of Maelstrom’s core software: Mica, Opal, and DataSHIELD

PHQE:  Québec-Europe Harmonization Platform for Research

What is PHQE? The Québec-Europe Harmonization Platform for Research (PHQE) is a Maelstrom Research initiative aiming to document and promote the scientific usage of large scale epidemiological studies recruiting Quebec residents and collecting a variety of information on health outcomes and associated risk factors. It was established to give the opportunity to researchers from different fields to describe their study infrastructure and foster development of harmonization projects and new innovative research collaborations among Quebec and European researchers.

INTR:  International Network of Twin Registries

What is INTR? The International Network of Twin Registries (INTR) aims facilitate research collaborations that use data from twin registries around the world. To fulfill this mission, INTR develops sustainable resources that can be shared with the global research community to promote and accelerate twin research.Such resources are designed to be openly available to the world’s research community in order to foster scientific collaborations, in particular those involving multiple twin registries. INTR is building an unprecedented scientific platform with tremendous potential to advance knowledge of complex disease phenotypes. By providing access to large numbers of twin pairs, this effort will catalyze genomic and post-genomic discoveries that would otherwise be impossible. INTR aims to explore the potential to harmonize data across twin registries (more than 500,000 twin pairs) from 26 twin registries over the world. The consortium will also provide an infrastructure to answer a wide range of research questions.

Partnership details:
  • Maelstrom provides methodological support to the INTR network for questions related to data harmonization, and has helped create the INTR Mica-powered website

The PREMMIUM:  Integrated Research Platform on Mental Health and Sexually Transmitted Infections of the Université de Montreal

  •  Project timeline: 04/2014 – 04/2016

What is PREMMIUM? The Integrated Research Plaform on Mental Health and Sexually Transmitted Infections of the Université de Montréal (PREMMIUM) supports the undertaking of innovative clinical research on the prevention of sexually transmitted infections and mental health disorders. PREMMIUM will facilitate the entire study data management lifecycle for the collection of participant reported outcomes, reporting, sharing, analysis, dissemination of results and archiving.

Partnership details:
  • Maelstrom customizes its suite of software to address the specific needs of PREMMIUM
  • Maelstrom also leads the development of the PREMIUM web portal using Mica

PedsMS:  Pediatric Multiple Sclerosis

  •  Project timeline: 01/2013 – 03/2016

What is PedsMS? The PedsMS project aims at developing a toolkit that will guide pediatric MS researchers in developing data collection questionnaires for use in their studies. The development of the toolkit is based on rigorous epidemiological and expert consensus methods and in line with the needs of, and relevant for, the pediatric MS research community.

Partnership details:
  • Maelstrom provides the PedsMS team with support in terms of methods for prospective data harmonization