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

BBMRI-LPC is one of the largest biobanking networks in Europe and aims to facilitate scientists’ access to large prospective study datasets on human health and disease. BBMRI-LPC facilitates multinational research projects and increases the utilization of large sample collections in research on human health by improving data harmonization and providing solutions for transnational data access and networking.

Within the partnership, Maelstrom Research:
  • supported the creation of an inventory of data collected by the BBMRI-LPC participating studies

  • software were formally evaluated by BBMRI-LPC to estimate there relevance to support data harmonization

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

The BioSHaRE project aimed to develop data harmonization tools and standardized IT systems for existing biobanks and cohorts across Europe and apply them to conducting pan-European epidemiological research. Over the course of the BioSHaRE project, data collected by 13 cohorts from eight different countries (totalling over 750,000 participants) was harmonized and co-analyzed to address a wide range of research questions. This work resulted in common-format datasets across cohorts and federated databases that were remotely analyzed during epidemiological research. Explore the BioSHaRE network in the Maelstrom Catalogue [here](/mica/network/bioshare-eu).

Within the partnership, Maelstrom Research:
  • was supported by BioSHaRE to develop different components of Maelstrom methods and optimize Mica, Opal, and DataSHIELD software
  •  catalogued participating population-based studies, harmonized data collected by these studies and set up a federated database infrastructure allowing the use of DataSHIELD to analyze data

BRAIN:  Broad and Deep Analyses in Neurodegeneration

The BRAIN initiative brings together a team of scientists from across Canada under the Canadian Consortium on Neurodegeneration in Aging (CCNA) umbrella. One of its principal objectives is to leverage three studies and databases in order to carry out “Big Data” analyses. These analyses will provide new insights into dementia and facilitate the search for better treatments and a better understanding of the risk factors for dementia. The BRAIN project aims to position participating studies to work together and to harmonize their data with international groups, which is necessary for exploring gene/environment interactions in dementia as thousands of individuals must be pooled together to have the possibility to generate novel insights.

Within the partnership, Maelstrom Research:
  • developed a platform to facilitate harmonization and integration of data across studies and databases

  • evaluates the harmonization potential between participating studies

CDIC:  Canadian Data Integration Centre

CDIC is a strategic partnership between CARTaGENE, Maelstrom Research, and the Ontario Institute for Cancer Research. CDIC provides bioinformatics support to genomic researchers by supplying the software and analytic systems to collect and harmonize data, analyze it, and electronically publish the analytical results. Among its services, CDIC assists in the design, collection, and analysis of human genomic, clinical, and phenomic data, in the harmonization of data from multiple sources, and in the development of integrative data portals to permit researchers and other clients to effectively mine the data.

Within the partnership, Maelstrom Research:
  • customized its suite of software to include features that enabled the management, harmonization, and co-analysis of genomic data

  • provided data harmonization and integration services to CDIC clients

CHPT:  Cross-cohort Harmonization Project for Tomorrow

CHPT aims to leverage collaborations across some of the world's largest population-based cohorts to facilitate interdisciplinary, transnational 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. Explore the CHPT network in the Maelstrom Catalogue here.

Within the partnership, Maelstrom Research:
  • inventoried CHPT participating cohorts and the variables they collected

  • explored harmonization potential across 13 international large-scale cohort studies to answer a wide range of research questions on the determinants and etiology of cancer and other major chronic diseases

INTR:  International Network of Twin Registries

INTR aims to facilitate research collaborations using data from twin registries from around the world. To fulfill this mission, INTR built a scientific platform with the potential to advance knowledge of complex disease phenotypes. By providing access to large numbers of twin pairs, INTR has the potential to catalyze genomic and post-genomic discoveries that would otherwise be impossible. INTR aspires to explore the potential to harmonize data across twin registries using 26 twin registries located in different countries (more than 500,000 twin pairs).

Within the partnership, Maelstrom Research:
  • provided methodological support to the INTR network for questions related to data harmonization, and has helped create the INTR website

PedsMS:  Pediatric Multiple Sclerosis

  • Timeline:  01/2013 – 03/2016

The PedsMS project’s main aim was to develop a toolkit that would guide pediatric MS researchers in developing data collection questionnaires for use in their studies. The development of the toolkit was based on expert consensus methods and was in line with the needs of, and relevance for, the pediatric MS research community.

Within the partnership, Maelstrom Research:
  • provided support to the PedsMS team in terms of methods for prospective data harmonization

PHQE:  Plateforme d’harmonisation Québec-Europe (Quebec-Europe Harmonization Platform)

  • Timeline:  01/2012 – 12/2015

Led by Maelstrom Research, the PHQE initiative aimed to document and promote the scientific use of large-scale epidemiological studies recruiting participants from the province of Quebec, Canada. It was established to give researchers conducting studies in Quebec the opportunity to describe their studies and foster the development of innovative health research collaborations between Quebecois and European investigators, using harmonized data.

Within the partnership, Maelstrom Research:

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

  • Timeline:  04/2014 – 03/2017

SPIRIT is a collaborative network for research on the intra-uterine determinants of child health and development, and perinatal health services in Quebec, Canada, and Shanghai, China. The overall aims of this network are to harmonize Canadian and Chinese pregnancy and birth cohort data, to establish an infrastructure of knowledge transfer between the partners and users of the network, and to reinforce the strategic positioning of academic and industrial partners in Quebec, China, and internationally. Explore the SPIRIT network in the Maelstrom Catalogue.

Within the partnership, Maelstrom Research:
  • provided support to SPIRIT through the development of a standardized study catalogue using Mica software

  • helped SPIRIT researchers harmonize data using its Opal software and set up a federated data infrastructure to securely co-analyze harmonized datasets across participating studies using DataSHIELD analysis

The PREMMIUM:  Plateforme de Recherche Intégrée sur les Maladies Mentales et Maladies Infectieuses de l'Université de Montréal (Integrated Research Platform on Mental Health and Sexually Transmitted Infections of the University of Montreal)

  • Timeline:  04/2014 – 06/2017

PREMMIUM is a data management platform that supports clinical research on the prevention of sexually transmitted infections (STI) and mental health (MH) disorders. PREMMIUM aims to facilitate the entire study data management lifecycle to enable innovative STI prevention and MH clinical research programs. Specifically, PREMMIUM implemented electronic data capture systems for participant-reported outcomes, a harmonization platform to transform study specific data into common formats, and a centralized web portal to document clinical trials, cohort studies, and evaluative research studies in order to facilitate access to study information, results, data, and metadata.

Within the partnership, Maelstrom Research:
  • led the development of the PREMMIUM web portal using its Mica software

  • customized its Opal and Mica software to address the specific data management and integration needs of the PREMMIUM project

P3G2:  Policy Partnerships Project for Genomic Governance

P3G2 is a research project of the Centre of Genomics and Policy (CGP) (McGill University) 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.

Within the partnership, Maelstrom Research:
  • The different components of the Maelstrom Research platform were initially developed under the P3G (now P3G2) consortium