Ac2orn and Neuroblastoma Canada have curated a list of national and regional financial resources for families that need to travel across Canada when their child has cancer.
Financial resources for families with children with cancer travel, accommodation and living expenses for patients and families that need to travel across Canada when their child has cancer.
See link for most recent version. Last Updated: March 27, 2019
Available as HTML and PDF.
Appel à tous les chercheurs! Vous voulez avoir un impact sur le #cancerchezlesenfants? Le programme #Cancer chez les jeunes au Canada pourrait avoir les données qu’il vous faut.
Informez-vous sur le programme et sur l’accès gratuit aux données:
La base de données du programme Cancer chez les jeunes au Canada inclut des informations détaillées sur le diagnostic, le traitement et les résultats pour tous les patients ayant reçu des soins aux 17 centres d’oncologie pédiatrique du Canada. Il est possible de demander un accès aux données anonymisées sur les patients ou aux données regroupées en fonction de 200 variables, dont :
- les données démographiques;
- les détails sur le diagnostic;
- les traitements (ex. lieu et moment des soins; inscription à un essai clinique);
- les résultats sur au moins 5 ans de suivi.
Calling all researchers! If you are interested in making an impact on #childhoodcancer, the #Cancer in Young People in Canada program might have the data you need.
Learn more about the program and how you can apply for free access to data.
The Cancer in Young People in Canada program’s national database contains detailed information about the diagnosis, treatment, and outcomes of every patient cared for by the 17 pediatric oncology centres in Canada. Researchers can apply to access patient-level without personal and identifying details or aggregate data from as many as 200 variables, including:
- diagnosis details;
- treatments, including location and timing of care and clinical trial enrolment;
- outcomes over at least five years of follow-up.
Learn about Solutions for Kids in Pain (SKIP) in this 2 minute YouTube video | Suitable for staff meetings, before rounds/seminars, in waiting rooms, or on your website
If you make a post on your social media platforms, be sure to tag SKIP (@kidsinpain) and use the SKIP hashtag #ItDoesntHaveToHurt, they’ll share it and acknowledge our partnership with you!
Toronto: 6:30-7:30 pm EDT Tues April 23rd hosted by Ontario Brain Institute at Isabel Bader Theatre (max capacity 478)
“Pain in Children: What we don’t know can hurt them” (Andre Picard, Christine Chambers, Darcy Fehlings, + Julian/Donna Cappelli – patient partner/parent (focus is pain in children with disabilities).
For those not in Toronto, OBI will livestream on their Facebook page and we will live tweet as well using #TalkBrain and #ItDoesntHaveToHurt
Pain in children is misunderstood, under-diagnosed, and under-treated. This is even a bigger issue in children with disabilities. Our understanding of the negative impact pain can have on the developing brain has evolved, but there is a lack of change in pain management practices. Join us to discuss the many misconceptions around children’s pain, the latest research in pain management, and hear from patients and caregivers coping with pain every day.
HALIFAX: Solutions for Kids in Pain (SKIP) April 18th | Panel discussion and reception | Click to respond
Halifax: 6-8 pm ADT Thurs April 18th at Volta Effect (Canada’s East Coast Innovation Hub), “Injecting Innovation Into Health Care” – panel discussion (David Anderson, Christine Chambers, Erica Ehm, Emily Gruenwoldt, Rob MacCormick – patient partner) and networking reception (max capacity 140).
Event page: https://www.eventbrite.ca/e/injecting-innovation-into-healthcare-tickets-59465154879?mc_cid=91a4215f8b&mc_eid=679182eb20&fbclid=IwAR1hkSIdFAP6MuD-6r2uuH6bXeRPWdvjKiwVUjhaNtHoI2PHTGG13xL0mbE
For those not in Halifax we will livestream on Facebook and live tweet it as well using #ItDoesntHaveToHurtl:
The federal government has announced a $1.6-million/4yr grant for Solutions for Kids in Pain (SKIP), a new knowledge mobilization network to improve children’s pain management in Canada and around the world. Watch for resources and local launch events.
April 17, 2019, Halifax – The federal government has announced a $1.6-million grant, over four years, for Solutions for Kids in Pain (SKIP), a new knowledge mobilization network to improve children’s pain management in Canada and around the world.
SKIP will be based at Dalhousie University and will include more than 100 Canadian and international partners working together to put evidence-based solutions to child pain into practice.
SKIP will have four main hubs: the IWK Health Centre, SickKids (Toronto), Stollery (Edmonton), and Children’s Health Care Canada (Ottawa). Dr. Chambers and Doug Maynard (Children’s Healthcare Canada) are grant co-leads.
Twenty-two-year-old Halifax native, Katherine Dib, began experiencing chronic pain after a car accident. “As a 15 year-old high school student I didn’t understand why I had chronic pain or what options were out there. It was a long journey to get the treatment I needed. SKIP will help children and their families suffer less.” SKIP’s activities and outcomes will be guided by a diverse and experienced Board. “Solutions are known and available,” said SKIP Board Chair, Dr. Judith Hall. “We owe it to our children to put them into action. I am so honoured to be part of a network that will increase awareness and put the solutions into practice.”
An official SKIP launch will be held on Thursday, April 18th from 6-8pm at Volta in Halifax. Media are invited to attend.
- Dr.Doug Maynard SKIP Knowledge User Co-Director Children’s Healthcare Canada
- Dr. Christine Chambers, Dalhousie, Canada Research Chair in Children’s Pain
For media inquiries, please contact:
- Alyse Hand
- NATIONAL Public Relations
- Phone: 902-225-5939
- Email: firstname.lastname@example.org
Connect with SKIP:
Are you a researcher interested in childhood cancer? Cancer in Young People in Canada (CYP-C) can provide data that could help you make an impact. Click to learn how to access this rich data-set.
The new infographic at the link below provides an overview of how researchers can apply for and access in-depth data free of charge from the CYP-C program’s national surveillance and research database which contains detailed information about the diagnosis, treatment, and outcomes of every patient cared for by the 17 pediatric oncology centres in Canada.
CLICK NOW for agenda and registration for the ENACT symposium at Sick Kids | Learn about translating innovative research tests into clinical care (June 12th)
This multidisciplinary meeting will highlight emerging challenges and opportunities in test development through transnational research, and will bring together experts to address current limitations of provincial regulations for novel testing.
|Date:||June 12th, 2019|
|Time:||10:00 am – 4:00 pm|
|Place:||SickKids, PGCRL Auditorium, 686 Bay St, Toronto|
10:00 – 10:20am Welcome and Introduction
Dr. Ronald Cohn, MD, FACMG, Incoming CEO, SickKids; Dr. Michael Salter, MD, PhD, FRSC, Chief of Research, SickKids; Dr. Meredith Irwin, MD, Co-Chair ENACT Committee, Associate Chair (Research) Paediatrics, SickKids; Dr. Rulan Parekh, MD, MS, FRCP(C), FASN, Co-Chair ENACT Committee, Associate Chief of Clinical Research, SickKids
10:20 – 11:20am Keynote Address
Dr. Jeffrey Botkin, MD, MPH, Chair of National Academies of Sciences, Engineering & Medicine Committee that authored “Returning Individual Research Results to Participants” will discuss the reaction to the report, as well as other issues and challenges that have arisen in this area.
11:20 – 11:30am Coffee Break
11:30 – 12:10pm Test Development and Implementation
Dr. Wendy Ungar PhD, Chair of Ontario Genetic Advisory Committee, Health Quality Ontario; Dr. Susan Richardson, MD, FRCP(C), Senior Associate Scientist Emeritus, Research Institute, SickKids, Adjunct Scientist, Public Health Laboratories, Public Health Ontario
12:10 – 12:30pm The Next Frontier: Whole Genome Testing
Dr. Christian Marshall, PhD, Director, Molecular Genetics, SickKids
12:30 – 1:15pm Lunch
1:15 – 1:45pm Cancer Gene Panel Development
Dr. Adam Shlien, PhD, Associate Director of Translational Genetics, SickKids
1:45 – 3:30pm Testing Innovation Panel Discussions
Moderators: Dr. Gabrielle Boulianne, PhD, Associate Chief, Science Strategy & Innovation, SickKids; Dr. George Yousef, MD, PhD, Chief, Paediatric Laboratory Medicine, SickKids
3:30pm Concluding Remarks and Next Steps
Dr. Meredith Irwin, MD, Associate Chair (Research) Paediatrics, SickKids; Dr. Rulan Parekh, MD, MS, FRCP(C), FASN, Associate Chief of Clinical Research, SickKids
SickKids leadership assembled the ENACT (ENAbling Clinical Translation) committee to examine and address issues related to the development and use of novel tests to guide clinical diagnosis, prevention or treatment. Comprised of clinicians, clinician scientists, basic researchers, legal experts and bioethicists, the ENACT committee is working to create guidelines and policies for tests not currently covered by regulations; make recommendations around the development, use and validation of novel tests and return of results; and develop processes to provide access to innovative research tests and ultimately translate clinically validated tests into care.
Slide deck and other electronic resources available now for the CCRA 2016 Cancer Research Investment Report, and updated resources for childhood and adolescent cancers, cancer risk and prevention, translational research, cancer survivorship, and palliative and end-of-life cancer care
The electronic versions of the 2016 cancer research investment report, a slide deck with additional analyses, and an Excel workbook with supplementary data are now available on the CCRA website. In addition, our five special topic reports – childhood and adolescent cancers, cancer risk and prevention, translational research, cancer survivorship, and palliative and end-of-life cancer care – are now available in electronic form. These are in a new 4-page format and have re-branded slide decks. All of these products can be accessed at:
Hard copies of the annual investment report are forthcoming and you should receive by the end of this week.
Please note that the Tableau interactive tools for the 2016 investment report will be completed in the next few weeks and I am preparing sequential visualizations for each of the special topic reports. I will notify you when these tools are available.