Glossary

A

Assay:

A laboratory test to identify the presence of and/or measure the amount of a specific substance.

American Association for Cancer Research (AACR):

A US-based cancer research organization dedicated to accelerating the conquest of cancer. Through its various programs and services, the AACR fosters research in cancer and related biomedical science, accelerates the dissemination of new research findings among scientists and others dedicated to the conquest of cancer, promotes science education and training, and advances the understanding of cancer etiology, prevention, diagnosis and treatment throughout the world. For more information, visit: https://www.aacr.org/about-the-aacr/.

American Society of Clinical Oncology (ASCO):

A US-based professional organization for physicians and cancer professionals caring for or researching people with cancer. For more information, visit: https://society.asco.org/about-asco.

American Society of Hematology (ASH):

A US-based international professional society serving both clinicians and scientists who are working to conquer blood diseases through the promotion of research, patient care, education, training and advocacy in hematology. For more information, visit: https://www.hematology.org/about.

B

Basic research:

Any study being conducted to understand the underlying biology of a disease, and how that disease might be treated. This is often when scientists discover drug targets – the biological pathways they will attempt to modify with drugs to treat a disease.

Better Responses through Avatars and Evidence (BRAvE):

An initiative stemming from BC Children’s Hospital in Vancouver, British Columbia to deliver more effective precision medicine to the largest possible number of children through cutting-edge research. For more information, visit: https://www.bcchr.ca/brave-initiative.

C

Clinical research:

This is the next stage of the research cycle that involves people and aims to determine the safety and effectiveness of therapies, devices, tools or approaches to medical management that are intended for human use. Clinical research involves all studies that involve human participants. However, it does not include studies using existing biological specimens or only data collected without identifiers or from publicly available sources.

C17:

A pan-Canadian non-profit organization that aims to improve outcomes and quality of life for children and adolescents with cancer and serious blood disorders in Canada. For more information, visit: https://www.c17.ca.

Canadian Agency for Drugs and Technologies in Health (CADTH):

A pan-Canadian health organization, funded by Canada’s federal, provincial and territorial governments, that is responsible for driving better coordination, alignment and public value within Canada’s drug and health technology landscape. CADTH provides Canada’s health system leaders with independent evidence and advice so they can make informed drug, health technology and health system decisions. For more information, visit: https://www.cadth.ca/about-us.

Canadian Cancer Clinical Trials Network (3CTN):

A pan-Canadian initiative to improve the recruitment, efficiency and quality of academic cancer clinical trials in Canada. For more information, visit: https://3ctn.ca/about-us/.

Canadian Cancer Society (CCS):

A national cancer charity with the mission to improve the lives of all those affected by cancer through world-class research, transformative advocacy and compassionate support. For more information, visit: https://cancer.ca/en/about-us.

Canadian Distributed Infrastructure for Genomics (CanDIG):

A platform that enables querying and analysis of human genomics and biomedical data. For more information, visit: https://www.distributedgenomics.ca/.

Canadian Institute for Health Information (CIHI):

A Canadian, independent, non-profit organization that provides essential information on Canada’s health systems and the health of Canadians. CIHI provides comparable and actionable data and information that are used to accelerate improvements in health care, health system performance and population health across the country. For more information, visit: https://www.cihi.ca/en/about-cihi.

Canadian Institutes of Health Research (CIHR):

The Canadian federal government’s health research investment agency, which funds world-class health research across Canada. For more information, visit: https://cihr-irsc.gc.ca/e/37792.html.

Cancer in Young People in Canada (CYP-C):

A national, population-based surveillance program studying all children and youth diagnosed with children in Canada in which information on children and youth with cancer including treatments, complications and outcomes. The CYP-C program aims to help better understand risk factors, improve outcomes, enhance the quality and accessibility of care, and reduce late effects. The CYP-C surveillance program operates through a collaboration between the Public Health Agency of Canada, the Canadian Partnership Against Cancer and the C17 Council. For more information, visit: https://health-infobase.canada.ca/data-tools/cypc/.

Cancer Research Society (CRS):

A national not-for-profit organization with the mission to fund research on all types of cancer to help prevent, detect, and treat the disease. For more information, visit: https://www.societederecherchesurlecancer.ca/en/about-us/about-us.

Childhood Cancer Canada (CCC):

A foundation with the aim of creating victories for Canadian children with cancer through investment in national, collaborative, lifesaving research, empowering education and community programs. For more information, visit: https://www.childhoodcancer.ca/About-Us.

Children’s Healthcare Canada (CHC):

A Canadian non-profit organization that, through purposeful partnerships, aims to accelerate excellence and innovation in health systems caring for children and youth. For more information, visit: https://www.childrenshealthcarecanada.ca/en/about-us/about-us.aspx?_mid_=7050.

Children’s Hospital of Eastern Ontario (CHEO):

An academic children’s hospital and pediatric research centre located in Ottawa, Ontario, which is affiliated with The Ottawa Hospital and the University of Ottawa. CHEO provides complex pediatric care, research and education to the region of eastern Ontario. For more information, visit: https://www.cheo.on.ca/en/index.aspx.

Circulating tumour DNA (ctDNA):

DNA from cancerous cells/tumours found in the bloodstream.

D

Drug discovery:

The testing of drug-like compounds that are believed might affect the drug targets discovered during basic research. Drugs that show promise in these tests are termed “leads”.

Digital Health & Discovery Platform (DHDP):

A pan-Canadian initiative that seeks to improve health outcomes for Canadians by deploying cutting-edge technologies that advance precision medicine. For more information, visit: https://www.dhdp.ca/about/what-is-the-dhdp.

E

Empowering Next-generation Researchers In perinatal and Child Health (ENRICH):

A pan-Canadian initiative that has partnered with academic institutions, research networks and communities across the country to develop a training and mentorship platform to prepare the next generation of Canadian perinatal, child and youth health researchers. The platform will consist of three (3) distinct training programs: I. Raising Interdisciplinary Scientist Excellence (RISE) will be an open and accessible online learning system that will contains tools and resources for scientist development; II. The Enrichment Program will offer adaptable small group programs, arranged by either health research priorities and / or research methods, that will be designed to provide mentoring, experiential opportunities, community and support; III. The Illumination Program will be made available to all trainees, and will provide opportunities to network, find mentors and collaborators, and meeting prospective employers. For more information, visit: https://enrichyourscience.ca/.

Enhancing Research Impact in Child Health (EnRICH):

A Canadian-led initiative that aims to enhance child health through the discovery and implementation of innovative methods that transform the way we design, conduct and report child health clinical research by developing and applying the methodology needed: I) to select, measure and report valid, feasible and distinct outcomes in child health research; and II) for the innovative design and conduct of clinical trials. The EnRICH program also offers training opportunities in this field. For more information, visit: https://lab.research.sickkids.ca/enrich/about-us/.

F

First Nations Information Governance Centre (FNIGC):

An independent, apolitical and technical non-profit organization operating with a special mandate from the Assembly of First Nations’ Chiefs-in-Assembly to: I) assert data sovereignty; II) support the development of information governance and management at the community level through regional and national partnerships; III) ensure that data gathering is done ethically; and IV) ensure that First Nations committees are empowered to use their data for their needs. For more information, visit: https://fnigc.ca/about-fnigc/.

Food and Drug Administration (FDA):

The US federal government’s agency responsible for the protection of public health by: I) ensuring the safety, efficacy and security of drugs, biological products and medical devices; II) ensuring the safety of the US’ food supply, cosmetics and products that emit radiation; III) regulating the manufacturing, marketing and distribution of tobacco products; IV) helping to expedite innovations that make medical care more effective, safer and more affordable; and V) helping the public access accurate, science-based information they need to use medical products and foods. It is also the US’ regulatory body responsible for the oversight of clinical trials that include unapproved investigational treatments. For more information, visit: https://www.fda.gov/about-fda/what-we-do#mission.

I

International Classification of Diseases (ICD):

An official list of categories of diseases, physical and mental, issued by the World Health Organization (WHO). It is used primarily for statistical purposes in the classification of morbidity and mortality data. For more information, visit: https://www.who.int/standards/classifications/classification-of-diseases.

IND-enabling studies:

The testing of the leads with the most promising pre-clinical data in larger animals as part of the work-up to justify a clinical trial in humans.

K

Kids Cancer Sequencing (KiCS) Program:

Based at The Hospital for Sick Children in Toronto, Ontario, the KiCS program is a research study that aims to understand how to best integrate a comprehensive set of next generation sequencing (NGS) tests into clinical cancer care to learn more about the genome (genetic material) of participants’ tumor and healthy cells, which may also help guide therapy and future follow-up. For more information, visit: https://kicsprogram.com/kics.

L

Leukemia & Lymphoma Society of Canada (LLSC):

A Canadian non-profit organization that aims to improve the quality of life for those affected by blood cancers and their families by funding life-enhancing research and providing educational resources, services and support. For more information, visit: https://www.bloodcancers.ca/who-we-are.

Lead optimization:

The modification of the lead compound candidate to improve its performance, as well as the development of the safest and most effective dosing strategy.

M

Marathon of Hope Cancer Centres Network (MOHCCN):

Led by The Terry Fox Research Institute and The Terry Fox Foundation, the goal is to accelerate the adoption of precision medicine for cancer through the creation of a pan-Canadian network of designated cancer centres. This network is a collaborative platform that unites cancer researchers and clinicians in Canada and allows them to share their data and apply new technologies to deliver the best outcomes for each cancer patient across Canada. For more information, visit: https://www.marathonofhopecancercentres.ca/about-us/who-we-are.

Maternal Infant Child and Youth Research Network (MICYRN):

A Canadian non-profit, charitable organization that aims to catalyze advances in maternal and child healthcare by through collaboration, removing barriers and building capacity in Canada for high-quality applied health research. It links 21 maternal and child health research organizations based at academic health centres in Canada and is affiliated with an additional 25+ practice-based research networks. For more information, visit: https://www.micyrn.ca/vision.

MEK inhibitors (MEKi):

A substance that block proteins called MEK1 and MEK2 that help control cell growth and survival. Blocking these proteins may help keep cancer cells from growing and may kill them. Some MEK inhibitors are used to treat cancer as a type of a targeted therapy.

N

National Cancer Institute (NCI):

The NIH institute that is the principal agency for cancer research and training. For more information, visit: https://www.nih.gov/about-nih/what-we-do/nih-almanac/national-cancer-institute-nci.

National Institute for Health and Care Research (NIHR):

The United Kingdom’s federal health funding agency. For more information, visit: https://www.nihr.ac.uk.

National Institutes of Health (NIH):

The US’ federal medical research agency, which is comprised of 27 institutes and centres. For more information, visit: https://www.nih.gov/about-nih/who-we-are.

O

Ownership, Control, Access and Possession (OCAP) Principles:

The principles that assert that First Nations have control over data collection processes, and that they own and control how this information can be used. For more information, visit: https://fnigc.ca/ocap-training/.

Ontario Institute of Cancer Research (OICR):

A collaborative research institute that conducts and enables high-impact translational cancer research by accelerating the development of discoveries for patients around the world while maximizing the economic benefit of this research for the people of Ontario. For more information, visit: https://oicr.on.ca/about/overview/.

P

Pediatric Cancer Models and Mechanisms (PCMM) Network:

A pan-Canadian initiative to catalyze connections between researchers across the pre-clinical spectrum to drive biology-informed early phase clinical trials in pediatric hematology and oncology. For more information, visit: pcmmnetwork.ca.

Pediatric Oncology Group of Ontario (POGO):

An Ontario-based non-profit organization that works to ensure that everyone affected by childhood cancer in Ontario has access to the best care and support by providing programs, services, resources and advocacy for families, professionals, survivors and communities. For more information, visit: www.pogo.ca.

Pre-clinical research:

This is a stage of the research cycle that includes any research about a disease or associated treatment before it is tested in humans. This stage of research encompasses everything from experiments to investigate the causes of disease to testing potential treatments in animals and is generally divided into four phases: I) basic research; II) drug discovery; III) lead optimization; and IV) investigational new drug (IND)-enabling studies.

Personalized OncoGenomics (POG):

A clinical research initiative based in British Columbia that is embedding genomic sequencing into the diagnostic and treatment planning for patients with incurable cancers. For more information, visit: https://bccancerfoundation.com/why-give/research/personalized-onco-genomics/.

Personalized Targeted Therapy in Refractory or Relapsed Cancer in Childhood (TRICEPS):

An initiative based in Quebec that involved sequencing tumor DNA / RNA to identify driver mutations as well as identify therapeutic alternatives for children and adolescents with refractory or relapsed cancer.

Plasma or Extracellular Vesicles:

Sacs released by cells into the space outside a cell but still within the respective tissue or organ (termed plasma in the blood, or extracellular space in tissues and organs).

PRecision Oncology For Young peopLE (PROFYLE):

A national collaborative program for children, adolescents and young adults (CAYA) [0 to 29 years old] with refractory, relapsed and metastatic (‘hard-to-cure’) cancers in Canada. The initiative has united an interdisciplinary team of experts, leaders, research teams, end-users and advocates from across Canada to develop and implement a pipeline providing equitable access to tumour molecular profiling (using next-generation molecular tools, DNA sequencing, RNA sequencing, cancer model systems and proteomics) with matched normal (germline) sequencing to identify disease- and patient-specific biomarkers and to uncover novel target-specific treatment options in a clinically relevant timeframe. The information gathered (results and recommendations) is provided to each individual patient’s clinical care team to be considered for the care and treatment decisions. For more information, visit: https://www.profyle.ca/.

Proteomics:

The study of the structures, composition, function, interactions and activities of proteins.

R

Rare Disease Models and Mechanisms (RDMM) Network:

A pan-Canadian intiative to catalyze connections between people discovering new genes in patients with rare diseases, and basic scientists who can analyze equivalent genes and pathways in model organisms/systems, with the intention of expediting the understanding of rare disorders, enabling the design of new therapies and, ultimately, benefiting those affected by rare diseases. For more information, visit: https://www.rare-diseases-catalyst-network.ca.

RareKids-CAN:

A pan-Canadian initiative led by MICYRN that aims to revolutionize the landscape of rare disease research and treatment for children and their families in Canada and beyond by: I) establishing a robust platform in Canada to support pediatric rare disease clinical trials that provides essential infrastructure and resources; II) enhance capacity through comprehensive training and mentorship opportunities; III) attract international trials and investment; IV) foster inclusivity; and V) improve accessibility. This initiative will prioritize data collection and analysis to inform decision-making, which will also support increased submissions for Health Canada authorization to ensure timely access to innovative therapies for those impacted by rare diseases. For more information, visit: https://www.micyrn.ca/posts/pedrdnetwork.

S

Solutions for Kids In Pain (SKIP):

A Canadian non-profit knowledge mobilization network that aims to improve children’s pain management by mobilizing evidence-based solutions through coordination and collaboration. For more information, visit: kidsinpain.ca.

Special Access Programme (SAP):

A national program through Health Canada that allows practitioners to request access to drugs that are unavailable for sale in Canada. This access is limited to patients with serious or life-threatening conditions on a compassionate or emergency basis when conventional therapies have failed, are unsuitable or are unavailable. For more information, visit: https://www.canada.ca/en/health-canada/services/drugs-health-products/special-access/drugs/special-access-programme-drugs.html.

T

Terry Fox Foundation (TFF):

A foundation with the mission to maintain the vision and principles of Terry Fox while raising money for cancer research through the annual Terry Fox Run, Terry Fox School Run, as well as tribute donations and planned giving. For more information, visit: https://terryfox.org/our-mission/.

Terry Fox Research Institute (TFRI):

The research institute of the Terry Fox Foundation, which invests in world-class collaborative cancer research teams and partnerships, as well as groundbreaking scientific projects, that are likely to accelerate discoveries for the benefit of cancer patients. For more information, visit: https://www.tfri.ca/.

Toronto Outcomes Research in Child Health (TORCH):

An inter-disciplinary pediatric collaboration led by scientists and physicians at The Hospital for Sick Children. The TORCH initiative 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. For more information, visit: https://lab.research.sickkids.ca/enrich/research-projects/torch-2020/.