Recommendations around Central Lines and Water Exposure Survey
Central lines have made the treatment and supportive care of pediatric oncology patients much easier but there are also risks to having one of these lines in place and may require restriction in activity. There is limited and inconsistent information in the literature around water exposure and central lines, and even less specifically for pediatric oncology patients.
We are surveying the staff (oncologists and nurses) at the C17 centers across Canada about current recommendations they provide to patients with central lines and their caregivers. Please forward the link to other members of your team that you feel could contribute to the survey results.
We would appreciate if staff from all C17 centres would complete this survey before May 1.
The survey can be found here: https://forms.office.com/Pages/ResponsePage.aspx?id=hgSTEXC08kiRZj8Mwwh3J9ToL85RMNtJuU7mrFau3GNUNEFTQjMwUlFITzE1NzZGTjFSMjAwTlU3Qi4u
Thank you,
Karina Black NP and Jodie Jesperson RN
Northern Alberta Children’s Cancer Program
Stollery Children’s Hospital
Please share as part of #AYAWEEK (April 4-10) – the new AYA CAN – Canadian Cancer Advocacy website is live!
https://www.ayacan.ca/
AYA CAN is a peer-led national organization advocating for Canadian adolescents and young adults (AYA) affected by cancer.
#AYAWEEK🇨🇦 #AYACSM #AYAWEEK #AYACSM🇨🇦
#TalkClinicalTrials: Experiences in Cancer Trials – FaceBook Live event on Friday February 4, 2022
On February 4th, World Cancer Day, Clinical Trials Ontario is hosting a Facebook Live event to talk about experiences in engaging with cancer trials and share information and resources that can help people learn about trials and make well-informed decisions. Hear from Jackie Manthorne, President and CEO of the Canadian Cancer Survivor Network, Emily McIntosh, Ph.D., Member of CTO’s College of Lived Experience and Dawn Richards, Director, Patient & Public Engagement at CTO.
Check out the details on CTO’s new Facebook page: https://fb.me/e/2mKpWQURA
Protect our Access: Update on Patented Medicine Prices Review Board (PMPRB) Changes
Learn more at Protect Our Access – Canadian Cancer Survivor Network and Protect our Access: Update on Changes to the Patent Medicines Pricing Review Board (PMPRB) – Canadian Cancer Survivor Network
The federal government’s plan to push patented drug prices lower continues to meet with controversy. The changes to the regulations governing the Patented Medicine Prices Review Board (PMPRB) have aroused criticism from patient groups and the pharmaceutical industry, which are concerned that the changes will result in fewer life-saving drugs being available in Canada. Rather than being open to dissenting voices and facilitating a constructive debate, the Patented Medicine Prices Review Board, the government agency responsible for ensuring that the prices for patented medicines are not excessive, has declined to engage in good faith with patient organizations, disregarded their input into the PMPRB’s consultation process, and planned to discredit them publicly.
In May 2021, an internal communications plan of the PMPRB was disclosed through an Access to Information and Privacy (ATIP) request. It revealed the PMPRB’s intentions to undertake a public relations campaign, budgeted at $56 000 of public money, aiming to persuading the public – not so much with facts as with rhetoric – that the new regulations are unequivocally in the public’s interest, and to discredit patient organizations that have voiced concerns. The document specifically names the Best Medicines Coalition (BMC), the Canadian Organization for Rare Disorders, and “the CF community” (probably referring to Cystic Fibrosis Canada), claiming that they have been “spreading disinformation” and conflating their views with those of the pharmaceutical industry. (CCSN is one of the BMC’s member organizations. Cystic Fibrosis Canada has also expressed concerns about the new regulations and is a member organization of the BMC.)
Copied from the Canadian Cancer Survivor Network (CCSN) July 2021 Newsletter, which can be accessed in it entirety at Your CCSN July 2021 Newsletter – Stay up to date and informed. (mailchi.mp)
Contribute to the the comprehensive analysis of the most needed medicines for children to inform the review of the Essential Medicines List for Children. Respond via a 15 minute survey by Aug 31st.
To inform this review, a survey has been prepared below.
Could we please ask you to circulate this survey to paediatrician or healthcare professionals associations in your respective countries or any network that could distribute this survey?
To start the survey click here: https://bit.ly/2SS31Im.
The more responses we get the better informed update can be made to the EMLc so we would really appreciate your help on this matter.
Many thanks
Best regards,
Marie VALENTIN Technical Officer – MHP/RPQ/REG/RCN
Dear colleague,
The World Health Organization (WHO) is initiating a comprehensive analysis of the most needed medicines for children to inform the review of the Essential Medicines List for children (EMLc). As a member of the WHO-led network Global Accelerator for Paediatric formulations (GAP-f), Penta is collaborating with this review.
We need your help as a health care professional prescribing, preparing, or administering medicines to children to understand:
· Which paediatric formulations do you find most problematic and why?
· Which medicines are missing or are not accessible for the children you care for and why?
To start the survey click here: https://bit.ly/2SS31Im.
The survey should not take more than 15 minutes of your time. You can save your responses and return to complete them at any time until the survey is closed on August 31st, 2021.
Thank you in advance for contributing to the survey completion.
Please do not hesitate to share the link to the survey with other colleagues who may provide a knowledgeable opinion.
We remain available to clarify any doubt you may have on the survey and will be happy to assist and receive your questions at the following email address:
We really appreciate your input!
Carlo Giaquinto – President of Penta Foundation and Marc Lallemant – GAP-f Clinical Research Working Group leader
The BioCanRx-Cancer Stakeholder Alliance Learning Institute is looking for participants! Apply by July 30, 2021.
The Learning Institute brings together patients and caregivers and trainees (graduate and medical students) at the Summit for Cancer Immunotherapy.
Participants engage in a series of interactive knowledge exchange sessions with the purpose of teaching patients and caregivers about the emerging and innovative concepts in immuno-oncology and providing trainees with an opportunity to learn from patients and get feedback about their research.
This year, we are looking for approximately eight patient scholars and eight HQP to virtually take part in the Learning Institute. If you are interested in participating as a patient scholar or an HQP, please click here for more information on the program and a link to the application. Please complete and submit your application by 11:59 pm ET on Friday, July 30, 2021. Feel free to share this information with anyone interested in learning more about this opportunity. Do not hesitate to contact Rida Gill (rgill@biocanrx.com) for further questions.
General Call for Learning Institute Applications – BioCanRx
JOB POSTING: Pediatric Hematologist Oncologist – Saskatoon
Saskatchewan Health Authority – Saskatoon and University of Saskatchewan, Department of Pediatrics, is seeking applications for a full time Pediatric Hematologist Oncologist to join their team. The Department of Pediatrics
is dedicated to providing exemplary health care for children, ensuring excellence in training of future pediatrics health care providers, undertaking meritorious research and advocating for the health and well-being of children and youth. The position will comprise of a mixture of clinical service and academic pursuits in Pediatric Hematology Oncology. Duties will include clinical service delivery, teaching and research. Clinical duties will include Pediatric Hematology Oncology consultative work in both the inpatient and ambulatory setting.
Additional information and application instructions can be found HERE.
CRAFT Proof of Concept Implementation Project – Request for Proposals
3CTN is pleased to announce that we are seeking Cancer Centres to implement the Proof-of-Concept Project for the Canadian Remote Access Framework for clinical Trials (CRAFT). Interested member centres are invited to respond to the attached Request for Proposals.
Please note the following dates and times:
- RFP issued: Wednesday February 3rd, 2021
- Opportunity to ask questions and seek clarification: today until Monday February 22nd, 2021 at 8pm EST (5pm PST)
- Proposals Due: Monday March 1st at 8pm EST (5 pm PST), to info@3ctn.ca
Background information on his initiative can be found in the attached position paper. All documentation and application materials can be downloaded from https://3ctn.ca/for-researchers/craft/.
Please feel free to contact me for any questions on this RFP or for more information on CRAFT.
Sincerely,
Rebecca
_________________________________________
Rebecca Rose (Rebecca.Rose at oicr.on.ca>
Clinical Research Project Manager, Canadian Cancer Clinical Trials Network (3CTN)
Canadian Pediatric Oncology Data Available Now
The Public Health Agency of Canada has launched new features in the Cancer in Young People in Canada’s interactive online Data Tool (https://health-infobase.canada.ca/data-tools/cypc/). These new features build upon the current data tool by adding a new Survival & Relapse RiskBeta tab which presents the latest overall survival, event-free survival and relapse risk statistics for children with cancer. Users can stratify these statistics by disease, period of diagnosis, sex, age, extent of disease and/or risk profile. The new data tool also includes a Publications tab that leads to previously published products and other resources.
SIOP COVID-19 resource page being curated by SIOP members – bookmark and submit updates
SIOP COVID-19 Resource: https://siop-online.org/covid-19-resources-and-guidance/
SIOP has established a page that lists in one place COVID-19 resources of targeted interest to the pediatric/adolescent oncology community. This list is curated through the submission from the medical community (see below to contribute).
- Guidance documents from academic research groups (e.g., CCLG, COG, St. Jude’s)
- Guidance documents from health organizations such as WHO (updated daily), PAHO, ASCO, WSPID, ESMO, Royal College,
- Peer reviewed publications
COVID-19 Resources Submission Form
SUBMIT here: https://casehippo.com/surveys#!/siop/babe0f10-a6e5-4aa1-984d-babe69923c41
“It is becoming clear that children and adolescents living with cancer and older people are particularly vulnerable to COVID-19, and that health systems in rich and poor countries alike are ill-equipped to respond.
In light of the above, we would be interested in learning how our members are rising to challenges posed by the pandemic. Please don’t hesitate to use this form to share any relevant information, insight and resources with us which we can post under our resource collection above.
SIOP reserves the right to select resources and cannot guarantee the inclusion of a resource shared. While we will endeavour to keep the list up to date, we rely on you to let us know any updates to the resources using this form.
The subsequent resource is for supporting the wider community on issues relating to paediatric and adolescent cancer and COVID-19. At this point, it is not for promotion of particular agendas or advocacy resources.”
C17 Council Blog 