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Day 2: Thierry Lacaze-Masmonteil, Maternal Infant Child Youth Research Network
The document details the objectives and structure of the Maternal/Child Health Research Network (MICRYN) in Canada, which aims to enhance access to high-quality health research for children and families. Established in 2006 and registered as a non-profit, MICRYN collaborates with various organizations and hospitals to support clinical trials and advocacy for pediatric health. The network emphasizes partnerships for improved research capabilities, regulatory support, and increased participation in clinical trials, particularly for rare diseases.
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Day 2: Thierry Lacaze-Masmonteil, Maternal Infant Child Youth Research Network
- 1. MICYRN – ConnectingMinds and Removing Barriers to High-Quality Health Research CORD conference – Ottawa June 08th, 2022
- 2. MICYRN respectfully acknowledgesthe Indigenous Peoples of all the lands. From coast to coast to coast, we acknowledge the ancestral and unceded territory of all the Inuit, Métis, and First Nations people that call this land home. Please take a moment, in your own time, to reflect and recognize the lands you are logging in from today https://native-land.ca/
- 3. A national maternal/childhealth research network • Established in 2006 • Linking all of the 18 child and the three of the largest maternal health research organizations in Canada • Incorporated non-profit, registered charity 2011 • BOD, executive team, with coordinating centre in BC • Funded by RIs, Foundations and Departments (also supplemented by CIHR and Genome Canada via Rare Diseases Network, Canadian Childhood Cannabinoid Clinical Trials Network, some fee-for-service support agreements with other organizations).
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- 5. National Coordinating Centre LogisticalSupport Communication and KT Finances and Project Management Maintaining Partnerships MICYRN Board of Directors Associate Director Clinical Trials Scientific Director Executive Director Engagement Associate Administrative Assistant Clinical Trials Platform • Pediatric Clinical Research Units at 18 Academic Child Health Centers : The “consortium” • ARO services – Delegated tasks of sponsorship MICYRN Research Organization Members MICYRN Executive
- 6. Affiliated Hospitals andResearch Organizations BC Children’s Hospital (Vancouver) BC Children’s Hospital Research Institute Alberta Children’s Hospital (Calgary) Alberta Children’s Hospital Research Institute Stollery Children’s Hospital (Edmonton) Women & Children’s Health Research Institute Jim Pattison Children’s Hospital (Saskatoon) Dept of Pediatrics, University of Saskatchewan Children’s Hospital (Winnipeg) Children’s Hospital Research Institute of Manitoba Children’s Hospital at London Health Sciences Children’s Health Research Institute – Western U McMaster Children’s Hospital (Hamilton) Dept of Pediatrics, McMaster University Sick Kids (Toronto) Sick Kids Research Institute Holland Bloorview Kids Rehab Hospital (Toronto) Bloorview Research Institute Mont Sinai Hospital (Toronto) Lunenfeld-Tanenbaum Research Institute Sunnybrook Hospital (Toronto) Sunnybrook Health Sciences Centre Kingston Health Sciences Centre Dep of Pediatrics, Queen’s University Children’s Hospital of Eastern Ontario (Ottawa)) CHEO Research Institute Montreal Children’s Hospital Research Institute at McGill U Health Centre CHU Sainte-Justine (Montreal) Centre de Recherche Sainte-Justine Hopital Fleurimont (CHUS, Sherbrooke) Dept of Pediatrics, University of Sherbrooke CHUL et Centre mere-enfant Soleil (Quebec City) Centre de Recherche du CHU de Quebec, Laval U IWK Health Centre (Halifax) IWK Health Centre Janeway Children’s Health Centre (St. John’s) Dept of Pediatrics, Memorial University
- 7. Advocacy and National Partnerships •Maternal/Child and Youth Health Research Director Council – national voice and direction, collaborative opportunities, COVID-19 challenges/approaches, advocacy • Paediatric Chairs of Canada (PCC) – advocacy, resident research • Children’s Healthcare Canada (CHC) – clinical investigation unit partnerships with hospitals, advocacy • Health Canada: OPPI and OCT – coordinated advocacy, consultation - GPFC, CPS, CHC, PCC, C17, other networks, institutions - Agile Regulation – Modernizing Pediatric Clinical Trials Regulations - Patented Medicines Pricing Review, Pediatric Drug Action Plan - National Strategy on High-Cost drugs for Rare Diseases
- 9. National Collaborations • RareDiseases: Models & Mechanisms Network (RDMM) • Canadian Childhood Cannabinoid Clinical Trials Network • MICYRN and Child Bright partnering for renewal (CIHR SPOR network – chronic diseases): Lessons learnt from Child Bright #1 • Canadian Pediatric COVID 19 research Platform (NPI Dr. Caroline Quach): MICYRN coordinating centre.
- 10. National Pediatric ClinicalTrials Infrastructure Tactics to improve Canadian child health through increased access to high-quality clinical trials supported by an efficient, safe, and family-centered national infrastructure. 1. Support the development of clinical trials unit (CTU) capability across the research organizations (e.g. national CTU capability database, delegated sponsorship tasks) 2. Develop multicentre trial guidance tools and resources (e.g. trials checklists, contracts lawyer network, support for trials submissions to Health Canada) 3. Build expertise as the “single-point” of contact for clinical trials to for the investigator community and industry (expertise pool of investigators, specialty research networks and industry centres of excellence)
- 11. Removing Barriers • Throughpartnerships with academia, MICYRN is assisting international and national investigators in the planning, development, and execution of non- oncology, multi-centre, maternal/child health clinical trials • Centralized national infrastructure • Academic Research Organization (ARO)-like function
- 12. ARO Services Pre-Award Services(In-kind) Post-Award Services (Cost Recovery) Protocol Transition Health Canada Regulatory Submissions Harmonized Ethics Support Cross Institutional Monitoring Program Contracts Facilitation Safety and Adverse Event Reporting Data Management Project Management Placebo Development and Drug Procurement Consultation (Regulatory and Budget) Scientific Depth and Protocol Optimization Letter of Support
- 13. Clinical Trial Sponsorship •Increase the number of CTs that Canadian children can participate in • Acquired clinical trial insurance • Serve as the Canadian Regulatory Sponsor for investigator initiated clinical trials
- 14. Proposal to Establisha Canadian Maternal/Child Health Clinical Trial Infrastructure to Support Canada’s National Strategy on High-Cost Drugs for Rare Diseases • Ensure effective novel therapeutics and interventions are available for children and their families with rare diseases • Improve equal access to, and foster diversity and inclusion in clinical trials • Implement processes to acquire data from CTs, real world data, registries • Generate high quality data to inform HC and facilitate decision making processes for access and pricing
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