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Toronto Outcomes Research in Child Health (TORCH) is an inter-disciplinary paediatric collaborative led by scientists and divisional representatives at The Hospital for Sick Children. TORCH facilitates the use of rigorous outcomes in child health research and in bedside care by focusing on the methodology behind the selection, measurement, analysis, benchmarking, and reporting of child health outcomes.
Updated August 2024
TORCH was founded in 2015 by Dr. Martin Offringa, Senior Scientist in the Child Health Evaluative Sciences (CHES) program. It serves as a local paediatric outcomes platform that advances outcome selection and reporting in paediatric health research and health system evaluation through the networking and collaboration with other established outcome groups and stakeholders in Canada and across the world.
- Director (2015-Present): Martin Offringa, MD, PhD
- Research Lead (2017-Present): Nancy Butcher, PhD
- Project Manager (2021-Present): Ami Baba, MRes
Ongoing collaborations with organizations and initiatives include:
- COMET Initiative (The Core Outcome Measures in Effectiveness Trials Initiative)
- COSMIN (COnsensus-based Standards for the selection of health Measurement Instruments)
- Cundill Centre for Child and Youth Depression, Centre for Addiction and Mental Health (CAMH)
- EQUATOR Network (Enhancing the QUAlity and Transparency Of health Research)
- ICHOM (The International Consortium for Health Outcomes Measurement)
- neoEPOCH (Neonatal Electronic health record data for Point Of Care Health)
- PROMIS (Patient-Reported Outcomes Measurement Information System)
- Cochrane Neonatal
- INFORM-RARE
Vision
To enhance child health by ensuring children are given safe and effective treatments based on evidence that addresses relevant and accurate child health research and health system performance outcomes.
Mission
To create and seize opportunities to improve paediatric research and health system performance outcomes by:
- Raising awareness on the importance of meaningful outcome selection, measurement, and reporting in children;
- Providing methodology to select, measure, and report truthful, discriminative, and feasible outcomes in child health research; and
- Supporting engagement with research ethics boards, funders, journal editors, regulators, and health system administrators to critically appraise outcome selection, measurement, and reporting.
1. Raise awareness:
- of the importance of selecting and measuring Core Outcome Sets in child health;
- of the importance of completely and transparently describing outcomes in clinical trials protocols and publications.
2. Provide methodology:
- develop Core Outcome Sets for a range of pediatric diseases (“what” and “how” to measure outcomes);
- improve clinical trial outcome reporting through the generation and implementation of CONSORT and SPIRIT-Outcomes Extensions (see below).
3. Support engagement:
- translate new insights to research and health system evaluation practice in collaboration with child health research stakeholders including research ethics boards, funders, regulators, journal editors, governments, and health system administrators;
- promote uptake and use of Core Outcome Set selection and measurement methods in paediatric clinical trials and healthy system evaluation;
- network with existing outcome and research organizations and initiatives.
Core Outcome Sets
Core Outcome Sets represent the minimum outcomes that should be measured and reported in all clinical trials of a specific health condition and are also suitable for use in clinical audit or research other than randomised trials. The development and implementation of a Core Outcome Set makes it easier for trial results to be compared, contrasted and combined, ultimately improving patient and health system outcomes and reducing research waste.
Sets in development:
- Adolescent depression – IN-ROADS (The International Network for Research Outcomes in Adolescent Depression Studies)
- Study protocol: Monga et al 2020
- Literature review protocol: Monsour et al 2019
- Literature review: Mew et al 2020
- Instrument appraisal studies: Stallwood et al 2020
- Paediatric anxiety – Core Outcomes and Measures for Pediatric Anxiety Clinical Trials (COMPACT)
- Study preregistration: Monga et al 2023
- Scoping review protocol: Patton et al 2022
- Paediatric inguinal hernia repair
- Literature review protocol: Maat et al 2023
- Neonatal necrotising enterocolitis
- Literature review protocol: Klerk et al 2023
Recently developed sets:
- Mucopolysaccharidoses (MPS)
- Study protocol: Howie et al 2021
- Core outcome set
- Paediatric appendicitis
- Study protocol: Knaapen et al 2019
- Literature review: Hall et al 2015
- Core outcome set: Knaapen et al 2020
- Rare metabolic diseases (MCAD and PKU)
- Study protocol: Potter et al 2017
- Literature review: Pugliese et al 2020
- Core outcome set: Pugliese et al 2021
- Patient and family engagement: Vanderhout et al 2021
- Children with feeding tubes and neurological impairment
- Literature review: Kapadia et al 2016
- Core outcome set: Joachim et al 2020
- COS Video: YouTube
- Neonatal opioid abstinence syndrome
- Study protocol: Kelly et al 2016
- Literature review: Shan et al 2020
- Core outcome set: Kelly et al 2020
Reviews of Core Outcome Sets:
- Development standards of pediatric core outcome sets: A methodological review
- Pediatric core outcome sets had deficiencies and lacked child and family input: A methodological review
Commentaries and Letters to the Editor on the Importance of Core Outcome Sets:
- Needed: guidance for reporting knowledge synthesis studies on measurement properties of outcome measurement instruments in health research. (Butcher et al 2020)
- Counting what counts in trials 2.0: Response to “Trials for depressive disorder in adolescents: the emperor’s new clothes” (Butcher et al 2020)
- From research to practice: the importance of outcome selection, measurement, and reporting in pediatric mental health research (Monga et al 2020)
- Counting what counts: the case for harmonized outcomes in child and youth mental health research (Szatmari et al 2019)
InsPECT: SPIRIT-Outcomes & CONSORT-Outcomes
Inadequate outcome reporting in clinical trials is a well-documented problem that impedes the ability of researchers to evaluate, replicate, and build upon study findings, which in turn impacts evidence-based clinical and policy decision making.
To facilitate harmonized reporting of outcomes in published trial protocols and reports, TORCH is leading the development of new outcome-specific reporting extensions to the SPIRIT (Standard Protocol Items: Recommendations for Interventional Trials) and CONSORT (Consolidated Standards of Reporting Trials) reporting guidelines, known as the SPIRIT-Outcomes and CONSORT-Outcomes reporting guidelines, respectively.
The SPIRIT and CONSORT-Outcomes reporting extensions will provide the first evidence-informed and consensus-based standards focused on outcome reporting in clinical trials that can be applied across diverse disease areas, populations, and outcome types. They have the potential to benefit trialists, systematic reviewers, journal editors, medical writers, and patient groups.
- Study protocol: Butcher et al 2019
- Literature review protocol: Butcher et al 2019
- Literature review: Butcher et al 2020
- SPIRIT-Outcomes 2022: Butcher et al 2022
- CONSORT-Outcomes 2022: Butcher et al 2022
As part of the InsPECT project, we are also assessing the current standard of outcome reporting in published clinical trials and cohort studies:
- Adolescent depression trials: Monsour et al 2020
- Cohort studies of neurodevelopmental outcomes in children born extremely preterm: Ding et al 2020
- Neonatal trials: Baba et al 2023 and Webbe et al 2023
- Registry-based randomized controlled trials: Baba et al 2023
Please email enrich.network@sickkids.ca if you are interested in learning more or becoming involved with any of these initiatives.