PEDIATRIC CANCER PRIORITY SETTING PARTNERSHIP

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About this project

 
Individuals affected by cancer asking questions.

What inspired this project? 

We started this project to create a new childhood cancer research agenda. This agenda will focus on patients,' caregivers', and clinicians' voices.

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Who are we? 

We are a team of patients, survivors, clinicians, and researchers from across Canada. We are working to create a relevant and new research agenda for childhood cancer.

Individuals collaborating at a desk.

What is a "PSP"?

A "Priority Setting Partnership" is a project that finds patients', caregivers' and clinicians' unanswered questions about childhood cancer. The top ten unanswered questions will form a new research agenda. 

 

Top 10 Priorities

In Winter 2020 and 2021, we released two pan-Canadian surveys and a Priority Setting Workshop was held in in Spring 2022. The final top 10 priorities have been released!

Thank you to everyone who participated and helped us with this project. This would not be possible without you.

At the beginning of the Priority Setting Workshop in Spring 2022, there were 24 priorities. The following 14 questions were also discussed and put in order of priority at the workshop.

Priority #11
Priority #11

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Priority #12
Priority #12

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Priority #24
Priority #24

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Priority #11
Priority #11

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1/14

Notre enquête a eu lieu pendant l’hiver 2020 et 2021 lorsque des questionnaires ont été complétés par des patients, survivants et cliniciens à travers le Canada, leur demandant à quelles questions ils souhaitent que la recherche réponde.

Notre atelier national d'établissement des priorités en matière de cancer pédiatrique au Canada a eu lieu en Mars 2022 et nous avons identifié les dix questions prioritaires auxquelles les chercheurs sur le cancer pédiatrique doivent répondre. Les voici!

Merci à tous ceux qui ont participé à notre enquête, nous vous sommes très reconnaissants de vos efforts jusqu'à présent.  

 

Les 10 Questions Prioritaires de Recherche

Au début de l'atelier d'établissement des priorités au printemps 2022, il y avait 24 priorités. Les 14 questions suivantes ont également été discutées et classées par ordre de priorité lors de l'atelier.

11
11

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12
12

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24
24

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11
11

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1/14
Priority #10
Priority #10

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Priority #9
Priority #9

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Priority #1
Priority #1

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Priority #10
Priority #10

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1/10
10
10

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9
9

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1
1

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10
10

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1/10

Meet the team

Photo of Dr. Lindsay Jibb

Project Lead

Dr. Lindsay Jibb, a Certified Pediatric Hematology/Oncology Nurse, holds the Signy Hildur Eaton Chair in Pediatric Nursing Research at The Hospital for Sick Children and the University of Toronto. Her research program is broadly focused on enhancing quality of life and improving psychosocial care for children, adolescents, and young adults with cancer and their families.

Photo of Tamara Rader

Project Chair

Tamara has been a Patient Engagement Officer with the Canadian Agency for Drugs and Technologies in Health (CADTH) since 2015.  She enjoys listening to people with lived experience from across Canada and finding ways to involve them in CADTH’s projects. Tamara joined the James Lind Alliance team in 2019.

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Project Coordinator

 

Elham Hashemi is a Clinical Research Project Coordinator at the Hospital for Sick Children, where she manages research projects in the Jibb Lab focused on eHealth and mHealth interventions for patients and caregivers and improving psychosocial care for patients with cancer and their families.

 

Dr. Lindsay Jibb

Tamara Rader

Elham Hashemi

Steering Committee Member

Alicia is a Registered Nurse on the Hematology and Oncology Inpatient unit at the Hospital for Sick Children and an incoming PhD student in Nursing at the University of Toronto under the supervision of Dr. Jibb.  Broadly, her research interests are aimed at improving the quality of life of pediatric oncology patients, survivors and their families using digital health interventions.

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Steering Committee Member

 

Surabhi Sivaratnam is a Research Assistant at the Hospital for Sick Children, and a Medical Student at McMaster University. His research interests include the centering patient voices in pediatric heme onc research, as well as advocating for equitable healthcare on the international stage through her role as Canadian Youth Delegate to the World Health Assembly. 

Steering Committee Member

Dr. Taccone is a Neurosurgery Resident at the University of Ottawa and PhD candidate in the Surgeon-Scientist Training Program / Clinician Investigator Program at the University of Toronto. Michael is also a survivor of childhood cancer, a Co-Chair of the Integrated AfterCare Advisory Council for the Pediatric Oncology Group of Ontario, and the founder of Childhood Cancer Survivor Canada (CCSC).

Alicia Kilfoy

Surabhi Sivaratnam

Dr. Michael Taccone

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Steering Committee Member

Geoffrey was diagnosed with Myelodysplastic Syndrome in 2015 and is a Patient Ambassador for The Hospital for Sick Children. He is passionate about improving the oncology pediatric research priorities and helping improve the lives of children with cancer.

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Steering Committee Member

Helena is a leukemia survivor and the founder of Helena’s Hope, an advocacy group with a mission to create a National Childhood Cancer Strategy, systems changes, and research funding. Helena was the 2017 Children's Miracle Network Champion and the 2019 Ontario Junior Citizen Award recipient. 

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Steering Committee Member

Sarah Calderwood is the proud Mom of Helena Kirk and together they are the Co-Founders of Helena's Hope which has a mission to find pathways for more Canadian children to survive cancer. Sarah owns Stirling Marketing & Communications and has over 20 years’ experience in the health sector.

Geoffrey Fang

Helena Kirk

Sarah Calderwood

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Information Specialist

Lily Ren is a medical librarian with experience in supporting literature reviews, systematic reviews, meta-analyses, and other publications. She currently works as a Research Communications Librarian at the Lane Medical Library at the Stanford School of Medicine, Stanford University.

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Steering Committee Member

Perri Tutelman is a senior PhD student in Clinical Psychology at Dalhousie University. Her research is based at the Centre for Pediatric Pain Research at the IWK Health Centre with Dr. Christine Chambers. Perri’s clinical and research interests include pain in pediatric oncology, the role of families, and patient engagement in research. 

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Steering Committee Member

Antonia entered the world of cancer in 2009 when her two-year-old son was diagnosed with stage IV high-risk neuroblastoma. She is the co-founder of Advocacy for Canadian Childhood Oncology Research Network (Ac2orn), founder of Neuroblastoma Canada, and the pediatric community member for the Ontario Cancer Research Ethics Board (OCREB).

Lily Ren

Perri Tutelman

Antonia Palmer

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Survivor & Clinical Nurse

Rachel Hamilton is a pediatric oncology nurse at SickKids in Toronto. She works as a Clinical Research Nurse Coordinator at SickKids, researching pediatric oncology and eHealth. Rachel is a pediatric cancer survivor, having been diagnosed with ALL at age 7, bringing together the lived experience of childhood cancer with clinical expertise.

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Steering Committee Member

Caroline is a momcologist, advocating for better childhood cancer outcomes and long-term survivorship. She provides health policy support to Helena’s Hope. Caroline has a Master of Health Science from the University of Toronto and is a Registered Dietitian. Her expertise is in health policy and program planning, focusing on equity and social determinants of health

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Steering Committee Member

Kathy Brodeur-Robb is the Executive Director of C17 Council, the Canadian pediatric hematology/ oncology network. She leads an office responsible for regulatory oversight of 270+ clinical trials, working with 16 North American and international academic cooperative groups. 

Rachel Hamilton

Caroline Wai

Kathy Brodeur-Robb

Photo of Dr. Daniel Morgenstern

Steering Committee Member

Dr. Morgenstern is a pediatric oncologist at The Hospital for Sick Children in Toronto specialising in the treatment of patients with neuroblastoma. He leads the hospital’s oncology early phase trial program and is Medical Director of the oncology Clinical Trials Support Unit.

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Steering Committee Member

 

Dr. Whitlock is the Division Head and Women’s Auxiliary Millennium Chair in Haematology/Oncology, the Director of the Garron Family Cancer Centre at The Hospital for Sick Children, and a Senior Associate Scientist in the Translational Medicine Program at SickKids Research Institute. His research interests include the biology and treatment of childhood acute leukemias and histiocytic disorders and the development of new drugs for the treatment of childhood cancers.

Photo of Adrienne Co-Dyre

Steering Committee Member

Adrienne Co-Dyre is the proud mom of 10 year old Gabby, a 3x leukemia survivor, and a fierce advocate for pediatric cancer patients and families.  Adrienne is an Academic Library Director with almost 20 years of experience running academic libraries, research services and programs.

Dr. Daniel Morgenstern

Dr. James A. Whitlock

Adrienne Co-Dyre

Collaborators

Helena's Hope Logo
James lind alliance logo
Advocacy for canadian childhood oncology research network logo
Ontario parents advocating for children with cancer logo
CIHR IRSC Logo
Children's cancer and blood disorders logo
Kids cancer care logo
Childhood cancer survivor canada logo
Pediatric oncology group of ontario logo