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Child Health Evaluative Sciences

TORCH

Overview 

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 bedside care by focusing on the methodology behind the selection, measurement, analysis and reporting of child health outcomes. 

TORCH is a local paediatric outcomes platform that advances rigorous outcome selection and reporting in paediatric health research and health systems through the networking and collaboration with other established outcome groups and stakeholders in Canada and across the world. TORCH has ongoing collaborations with several organizations and initiatives including:

  • The Core Outcome Measures in Effectiveness Trials Initiative (COMET)
  • Initiative Patient-Reported Outcomes Measurement Information System (PROMIS)
  • PROQOLID (The Patient-Reported Outcome and Quality of Life Instruments Database)
  • DIRUM (Database of Instruments for Resource Use Management)
  • COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN)
  • CanChild
  • International Consortium for Health Outcomes Measurement (ICHOM)

 

TORCH was founded in 2015 by Dr. Martin Offringa, Senior Scientist in the Child Health Evaluative Sciences (CHES) program.

Vision

To enhance child health by ensuring children are given safe and effective treatments based on evidence addressing relevant and accurate research and health system outcomes.

Mission

To create opportunities to improve paediatric research and health system outcomes by:

  1. Raising awareness on the importance of meaningful outcome selection and measurement in children
  2. Providing methodology to select, measure, and report truthful, discriminative, and feasible outcomes in child health research
  3. Supporting engagement with research ethics boards, funders, journal editors, regulators, and health system administrators to critically appraise outcome selection, measurement, and reporting

 

Scope of Activities 2018-2020

  • Raise awareness regarding the importance of selecting and measuring Core Outcome Sets (more information on COMET website: http://www.comet-initiative.org/).
  • Develop and evaluate methodology to identify child and family specific needs in selecting and measuring outcomes in children to:
    • Develop a Core Outcome Set for a range of  paediatric diseases.
    • Select and evaluate appropriate outcome measurement instruments.
  • Network with existing outcome organizations such as COMET, OMERACT, PROMIS, DIRUM, COSMIN, and ICHOM.
    • To ensure research is high impact by reducing duplication of effort and harmonizing methodologies within fields.
  • Translate to practice in collaboration with stakeholders, including research ethics boards, funders, regulators, journal editors, governments, and health system administrators.
    • To promote uptake and use of Core Outcome Set selection and measurement methodology in paediatric clinical trials and health system evaluation.

 

Current Projects 

  1. Core Outcome Set Development

Core Outcome Sets represent the minimum outcomes that should be measured and reported in all clinical trials of a specific health condition. 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.

To date, we are developing Core Outcome Sets in a variety of paediatric disease areas. Some examples include neonatal opioid abstinence syndrome (Kelly et al, 2016), appendicitis (Knaapen et al, n.d.), children with feeding tubes and neurological impairment (Kapadia et al, 2016), and adolescent depression (Offringa & Butcher, 2018).

  1. InsPECT Reporting Guideline

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, the Hospital for Sick Children is leading the development of a new reporting standard, the Instrument for reporting of Planned Endpoints in Clinical Trials (InsPECT).

InsPECT should provide the first evidence-informed and consensus-based guideline focused on outcome reporting in clinical trials that can be applied across diverse disease areas, populations, and outcome types. InsPECT has the potential to benefit trialists, systematic reviewers, journal editors, medical writers, and patient groups.

For more information, please visit: https://www.inspect-statement.org/

  1. ICHOM Overall Paediatric Standard Set

The International Consortium for Health Outcomes Measurement (ICHOM) is a non-profit international organization that promotes the standardized measurement and reporting of value-based outcomes across health systems. ICHOM develops Standard Sets using outcomes and outcome definitions that matter most to patients. ICHOM also drives the adoption of these Sets across global healthcare settings post-development.

In May 2018, ICHOM will start developing the long awaited set for Overall Paediatric Health. The Overall Paediatric Health Standard Set should enable value-based standardized outcome measurement in routine clinical practice worldwide, applied to all children, regardless of health condition. This should allow for improved decision making between providers and patients, facilitate quality improvement, reduce hospital costs, and allow for benchmarking across organizations.

Stakeholders from the Hospital for Sick Children will be involved with the development process. The TORCH platform will liaise between ICHOM and the SickKids community during and after this process.

Contact 

Please email martin.offringa@sickkids.ca if you are interested in learning more or becoming involved with any of these initiatives.

References

Kapadia, K. & Offringa, M. (2015). TORCH: Toronto Outcome Research in Child Health - enhancing evidence based outcomes selection in pediatric research. Trials, 16(Supp 3), P2.

Kapadia, M. Z., Joachim, K. C., Balasingham, C., Cohen, E., Mahant, S., Nelson, K., Offringa, M. (2016). A Core Outcome Set for Children With Feeding Tubes and Neurologic Impairment: A Systematic Review. Pediatrics, 138(1). doi:10.1542/peds.2015-3967

Kelly, L. E., Jansson, L. M., Moulsdale, W., Pereira, J., Simpson, S., Guttman, A., Offringa, M. (2016). A core outcome set for neonatal abstinence syndrome: Study protocol for a systematic review, parent interviews and a Delphi survey. Trials, 17(1). doi:10.1186/s13063-016-1666-9

Knaapen M., Hall, N.J., Van der Lee, J.H.,, Offringa, M., van Heurn, L.W.E., Bakx, R., Gorter, R.R. (n.d.) Protocol for the development of a global core outcome set for treatment of uncomplicated appendicitis in children. 

Offringa, M. & Butcher, B. (2018). Core set of outcomes for adolescents with major depressive disorder: A tool of standardized outcomes for clinical research and practice.

Updated May 2018