The CYP-C Management Committee are looking to fill several spots. Nominate, or encourage self-nomination, of individuals that fit the membership. Apply by 20-Nov-20

Call for Expressions of Interest to join CYP-C’s Management Committee.

The Cancer in Young People in Canada (CYP-C) program is seeking nominations for multiple individuals to join the Management Committee:

  • Epidemiologist
  • Pediatric Oncologist, preferably with interest in hematopoietic cell transplantation
  • Clinician
  • Allied health professional

The Management Committee makes decisions on behalf of the program based upon Public Health Agency of Canada (PHAC), C17 Council and Canadian Partnership Against Cancer (CPAC) perspectives. It also implements recommendations from the CYP-C Advisory Committee. It is responsible for providing oversight for data currency and quality, providing
clarifications or changes to the data elements, facilitating merger between Pediatric Oncology Group of Ontario Networked Information System (POGONIS) and directly entered CYP-C data, reviewing research proposals and approving all CYP-C products such as reports. It also develops and promotes the Research Champions role. All activities are undertaken with a view to ensure representation from all 17 centres and from a variety of role types including nurses, researchers, CRAs, pharmacists and other allied health staff. Decisions are made by consensus and, should there be no consensus, by majority vote.

The members of the Management Committee are chosen by the Chair of the Management Committee with advice from the Partner’s Group. The duration of a term is a period of two years, renewable for up to three consecutive terms.

The time commitment involves monthly calls with the Management Committee and annual face to face meetings. Additional questions that require reflection and response may arise intermittently. A small stipend is provided in recognition of the work performed.

Names of interested candidates should be sent to the C17 Surveillance Coordinator, Randy Barber ( Contact Randy if you have questions regarding governance.

You can find the C17 CYP-C website here:

Deadline for nominations is November 20, 2020.

JOB POSTING: Clinical Research Associate (CCBR)/Tech 3 at BC Children’s Hospital (full-time)

Posting at closes Oct 15/2020, after which CV’s can be submitted directly to Jess Davis (contact info below) through the end of October. 

Jessica Davis, CTU Manager, BC Children’s em/Onc/BMT at

A complete job description, including qualifications, can be found in the PDF of the posting:

As a part of BC Children’s Hospital Division of Hematology/Oncology/Bone Marrow Transplant (Hem/Onc/BMT) and the Child and Family Research Institute, the CCBR program supports around 100 active clinical research studies for children in British Columbia with cancer and blood disorders. These studies include, but are not limited to, research on active treatment, supportive care, and the long-term effects of cancer and blood disorders therapy. The CCBR has a number of research affiliations that include the Children’s Oncology Group, Industry Sponsors, Therapeutic Advances in Childhood Leukemia (TACL), the C17 Childhood Cancers and Blood Disorders, National Cancer Institute of Canada (NCIC), Pediatric Blood and Marrow Transplant Consortium (PBMTC), Centre for International Blood and Marrow Transplant Research (CIBMTR), Canadian Bone Marrow Transplantation Group (CBMTG) as well as investigator-initiated research.

The incumbent is required to conduct all research activities in an ethical manner, suited to the proper activities of the University of British Columbia and to the professional organizations governing his or herself and those governing the activities of the institution and all other investigators. Any procedures or data recorded as part of a trial must be accurate and must accurately reflect the work performed. Strict confidentiality of all study participants must be adhered to. All activities involving participants are
accountable to the Principal Investigator, the Division Head of Hematology/Oncology/Bone Marrow Transplant, and the candidate’s governing professional organization.

ONLINE: 7th annual Canadian Haemoglobinopathy Conference and General Assembly Meeting | 2020: Facing the storm together

TARGET AUDIENCE: Physicians, nurses, nurse practitioners, residents, medical and nursing students, physician assistants, social workers and other allied health practitioners involved in the care of patients with sickle cell disease, thalassemia and associated iron overload.

The Canadian Haemoglobinopathy Association (CanHaem) is proud to announce that the 7th annual Canadian Haemoglobinopathy Conference and General Assembly Meeting will be held ONLINE on Saturday October 24th, 2020. This meeting will bring together healthcare providers from across Canada to educate and discuss advances on the treatment of heamoglobinopathies.

See the website for the program

CLICK HERE for details and registration

The program will include a scientific virtual poster session where the latest findings and research in Canada will be shared. We invite all health care professionals to share their research experience by submitting an abstract.

Deadline to submit an abstract – October 4th, 2020

CLICK HERE to submit an abstract and registration


Overall objectives:

  • Update on haemoglobinopathies challenges.
  • Improve knowledge on haemoglobinopathies manifestations and care.
  • Favor interaction and development of collaboration between health care professionals involved in care of patients with haemoglobinopathies.

Utilization of blood resources in a crisis: approach of blood bank

  • Understand the challenges of blood management in a period of crisis.
  • Define a strategy on how to adapt blood usage in a preparation for a crisis.
  • Learn about the measures taken by national blood bank providers to face potential blood resource shortage in a period of crisis.

CanHaem recommendations in case of blood shortage

  • Review CanHaem guidelines in case of blood shortage.
  • Anticipate specific situations in our practice were blood usage could be rationed in case of a blood shortage.
  • Understand the need for a stepwise approach.

Impact of COVID19 on teenagers

  • Learn about teenagers’ perspectives of the pandemic.
  • Understand specific challenges that teenagers with chronic diseases face.
  • Identify factors of resilience to tailor our interventions .

Sickle cardiomyopathy and aging

  • Recognize sickle cardiomyopathy as a unique disease entity.
  • Critically evaluate best available evidence to develop an age- and risk-adapted screening strategy.
  • Identify specific early interventions to treat sickle cardiomyopathy.

Beliefs, perceptions and their impact on therapeutic adherence

  • Examine patient-related factors that will influence therapeutic adherence.
  • Learn about validated tools used to systematically assess patients’ beliefs, perceptions and psychological comorbidities that can impact on therapeutic adherence.
  • Recognize opportunities for patient-centred interventions to increase adherence and engagement.

Transition from pediatric to adult care: the SickKids-UHN experience

  • Analyze the elements that made the SickKids-UHN model successful.
  • Learn about tools used to systematically assess transition readiness.
  • Identify specific nursing interventions that can help with a difficult transition.

The Impact of COVID-19 on Pediatric Brain Tumor Research and Treatment: Upcoming Virtual Discussion targeted to patients/survivors and family, as well as healthcare providers [30-Sept-2020 12-1:15 EST, registration required]

The Society for Neuro-Oncology and the Pediatric Brain Tumor Foundation are pleased to announce a virtual discussion on the Impact of COVID-19 on Pediatric Brain Tumor Research and Treatment.

Registration is free and limited to the first 1,000 participants. The target audience is pediatric brain tumor patients, survivors, family members, and advocates.

Healthcare providers are also invited to attend. This panel discussion will be recorded and hosted on the SNO’s Online Education Center.

The Impact of COVID-19 on Pediatric Brain Tumor Research and Treatment, September 30, 2020, 12:00-1:15 pm EST


  • James T. Rutka, Neurosurgeon, Senior Scientist and Director, Arthur and Sonia Labatt Brain Tumor Research Centre, The Hospital for Sick Children, Toronto, Canada
  • Maryam Fouladi, Chair, CNS Tumor Committee, Childrens Oncology Group, Co-Executive Director, Pediatric Neuro-Oncology Program Nationwide Children’s Hospital, OHIO State University, Ohio, USA
  • Eric Bouffet, Past president and Advocacy Lead, International Society of Pediatric Oncology, Director, Pediatric Brain Tumor Program, The Hospital for Sick Children, Toronto, Canada
  • Duane Mitchell, Director of the UF Brain Tumor Immunotherapy Program University of Florida, Florida, USA
  • Laura Donovan PhD, Lecturer/Assistant Professor of NeuroOncology, University College, London, United Kingdom
  • Camille Conner – Parent of a Brain Tumor Survivor, Atlanta, USA


  • Annie Huang, MD, PhD, FRCP(C) Professor of Pediatrics, University of Toronto, Senior Scientist, Neuro-Oncologist Arthur and Sonia Labatt Brain Tumor Research Centre, Hospital for Sick Children, Toronto, Canada
  • Kathy Riley, MPH, CHES, Vice President of Family Support, Pediatric Brain Tumor Foundation

The learning objectives are as follows:

1. Describe the impacts of COVID-19 on the conduct and progress of pediatric brain tumor laboratory and clinical research and patient care.

2. Characterize opportunities for new partnerships and innovative strategies for research and patient care created by the disruption due to COVD-19.

3. Identify meaningful contributions patients, survivors, family members, advocates, doctors, and researchers can make to continuing research and clinical care for pediatric brain tumors in the wake of the COVID-10 disruption. Register for the webinar

We hope you are able to participate in this upcoming webinar. If you have ideas or topics you would like us to consider for future webinars, please email, or complete the online form.


The Society for Neuro-Oncology & The Pediatric Brain Tumor Foundation

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NEW DATA TOOL: Survival & Relapse Risk tool for CYP-C data now available

The Cancer in Young People in Canada (CYP-C) program has released new features of the CYP-C Data Tool on the Public Health Infobase website. The interactive data tool now includes a Survival & Relapse Risk Beta tab, which presents the latest overall survival, event-free survival and relapse risk statistics for children up to 14 years of age with cancer. Users can stratify these statistics by cancer type, the period of diagnosis, sex, age, and severity. The new features build upon the current Incident Cases Data Tool which includes the number of cases, crude incidence rates and age-standardized incidence rates.

Access the CYP-C data tool to learn about survival and relapse statistics. For optimal functionality of the data tool, we recommend opening the link on Google Chrome.

The CYP-C program’s surveillance and research database are available to researchers seeking to improve cancer diagnosis, treatment, and outcomes. See the “Publications” tab of the Data Tool for more information on how to apply for access.

CYP-C is a collaboration between the PHAC, all 17 pediatric oncology centres in Canada, the C17 Council, and the Canadian Partnership Against Cancer.

If you have feedback or questions, please contact us at

Maternal, Child and Youth Health Division, Centre for Surveillance and Applied Research, Health Promotion and Chronic Disease Prevention Branch, Public Health Agency of Canada, Government of Canada

La Collaboration canadienne pour la santé infantile : efficacité et excellence dans l’examen éthique de la recherche (CHEER)


Une nouvelle collaboration pancanadienne permettra de développer un processus d’examen du caractère éthique de la recherche afin de faciliter la réalisation d’études pédiatriques multicentriques efficientes. Basée à l’Université Queen’s et dirigée par Essais cliniques Ontario et le Réseau de recherche sur la santé des enfants et des mères, la Collaboration canadienne pour la santé infantile : efficacité et excellence dans l’examen éthique de la recherche (CHEER) vise à améliorer la santé des enfants au Canada grâce à une recherche accrue et accélérée en santé pédiatrique. Un financement de 2,5 M$ a été octroyé à CHEER par les Instituts de recherche en santé du Canada (IRSC) via l’Institut du développement et de la santé des enfants et des adolescents des IRSC et l’Institut de génétique des IRSC. Pour lire le communiqué de presse cliquez ici.

The Canadian Collaboration for Child Health: Efficiency and Excellence in the Ethics Review of Research (CHEER)

A new Canada-wide collaboration will develop a research ethics review process to facilitate efficient multi-site pediatric studies. Based at Queen’s University and led by Clinical Trials Ontario (CTO) and the Maternal Infant Child and Youth Research Network (MICYRN), the Canadian Collaboration for Child Health: Efficiency and Excellence in the Ethics Review of Research (CHEER) aims to improve child health in Canada by enhancing and expediting child health research. CHEER is supported by $2.5 million in funding from the Canadian Institutes of Health Research (CIHR), by the CIHR Institute of Human Development, Child and Youth Health and the CIHR Institute of Genetics. Read the full press release here.

Visit our newly launched, bilingual website

Childhood Cancer Survivor Canada is hosting SURVIVOR’S GOT TALENT on September 29th | See below for a poster for promoting in your clinic

Link for printing poster:

For many survivors, with the arrival of Childhood Cancer Awareness Month comes some of the negative memories and thoughts of how a cancer diagnosis as a young person takes away or limits some of our abilities to achieve, succeed, or perform to our best. This year however, CCSC wants to turn that on it’s head. Rather than focusing the lens on how childhood cancer can limit us, we want to take this opportunity to showcase all of the amazing things survivors CAN do.

With that in mind, we are hosting our very first Canada-wide survivor talent show.

We hope that you would be willing share this exciting upcoming event with survivors in your clinical or social circles.

To learn more and to register, survivors can visit

I have also attached a poster should you wish to advertise in your clinics or offices.

Sadly, I’m sure I have missed valuable contacts who would be excellent promoters of this event so please feel free to share amongst your professional circles as well.

Thank you all for your continued support!

Be well,

Michael Taccone

Michael Taccone, MD
Founder & CEO

New Agent and Innovative Therapies Program (NAIT) September newsletter available now

Download the newsletter here:


  • OZM-077 (carboplatin/azacitidine) study has now been amended to permit enrolment of patients with CNS or solid tumours in expansion phase (i.e. no longer limited to ependymoma)
  • RET inhibitor study is now open
  • New neuroblastoma study (oral aurora kinase inhibitor) is now open
  • Entrectinib study (NTRK and ROS1 inhibitor) study now open

Please note that despite COVID-19 restrictions, all NAIT studies continue to be open to enrollment

Studies for which funding is likely to be available from the trial itself are indicated in the table in the newsletter. For more information, please email:

Please note that study status can change frequently and information above may become out of date. Please contact us to discuss currently availability for potential patients.

Helping families navigate:

To assist patients and families with their transition, our Patient Navigator Program will collaborate with your team and the family to provide assistance with issues related to travel, accommodation, and navigating their way around the hospital and in the city. Furthermore, for patients living outside of Ontario, our Patient Navigator will assist physicians in completing an Out-of-Province Prior Approval Application to the Provincial Ministry of Health. Please contact us for more information.

BOOKMARK NAIT:  The current list of all open trials can be found on the NAIT Website at

The vision of the New Agents and Innovative Therapy Program (NAIT) supports The Garron Cancer Centre and Sick Kids’ commitment to innovation and providing Canadian children and their families living with cancer with greater access to the best and newest treatment that will assist to improve clinical care.

SKIP Open Access Special Issue: Paediatric and Neonatal Pain Journal

From Solutions for Kids in Pain: (SKIP): “We are excited to announce the release of an open-access special issue of Paediatric & Neonatal Pain, published in partnership with SKIP! This is the first of a two-part special issue focused on knowledge mobilization.

This edition features four articles that highlight how evidence about effective neonatal pain management can be mobilized via interprofessional interventions and social media. All four papers share a focus on moving knowledge about newborn pain treatment into practice, with the aim of improving outcomes for newborn infants and their families. Click below to access this issue’s four articles, and join the authors in their exploration of diverse and innovative research methods and interventions conducted in Switzerland, Brazil, and Canada.

Part two of this special issue will be released in December 2020, and will focus on knowledge mobilization in the context of pain in children and adolescents. Stay tuned!”



  • Open AccessSpecial issue on knowledge mobilization: Neonatal pain
  • A complex interprofessional intervention to improve the management of painful procedures in neonates
  • Effectiveness of a parent‐targeted video on neonatal pain management: Nonrandomized pragmatic trial
  • Usability, acceptability, and feasibility of the Implementation of Infant Pain Practice Change (ImPaC) Resource
  • “Be sweet to babies”: Use of Facebook as a method of knowledge dissemination and data collection in the reduction of neonatal pain