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CONSIDER CIRCULATING: Ewings Cancer Foundation of Canada (ECFC) has produced a documentary for wide distribution to educate non-oncology physicians, coaches, teachers and others on the importance of early detection of Ewing sarcoma and the impact of misdiagnosis.

*Approx 47 minutes. May not be suitable for young viewers.

Ewing sarcoma is difficult to identify and often gets misdiagnosed allowing the cancer to proliferate beyond treatable stages.  If you read the personal stories on the ECFC website, there is recurring theme of misdiagnosis (e.g., sport or dance injury). Early detection is critical to avoiding metastasis, which is associated with a drop from 50-70% survival rate to an unacceptable 10-15% survival rate.

ECFC has produced this 47 minute documentary for wide distribution to help educate on realities of Ewing sarcoma.   Find below a letter of introduction from ECFC.


Dear Doctors,

What do you know about Ewing sarcoma? Most know very little and, shockingly, this can also be true about health professionals. It is a nondiscriminatory, aggressive cancer that primarily attacks the bones and soft tissue in younger people but can affect anyone at any age. Characteristically one of the most painful forms of cancer, tragically Ewing sarcoma is difficult to identify and often gets misdiagnosed allowing the cancer to proliferate beyond treatable stages. Currently, Ewing sarcoma is being treated successfully in 50-70% of cases identified using dated chemo regimes that are more than 35 years old. As you know, once it starts to spread, survival rates plummet to just 10-15%. We know old chemo regimes are damaging young, growing bodies and endangering the survivors with their lifelong health complications. This, in turn, becomes a burden on an already stretched healthcare system. There is no measure on the physical, emotional and financial tole of their families.

 

 

The Ewings Cancer Foundation of Canada (ECFC) is a registered charity who has spent the last 10 years fighting tirelessly to raise awareness and ultimately for the eradication of Ewing sarcoma (ES) through fundraising efforts sponsoring critical research and development initiatives in Canada. The ECFC was formed by Tina Pernica and her husband Bernie in 2008 after the death of their 19 year old son, Reid. Tina and Reid spent many hours combing the internet, in vain, for information on ES to make sense of what was happening to him before he passed away. To their surprise, there was very little out there and more surprising was the lack of knowledge amongst the healthcare community. This was unacceptable to them and Reid vowed that should he survive, he would make a difference in Canada, increasing awareness and research in Ewing sarcoma. After his death, his parents carried on his pledge and today the ECFC has funded 4 critical research grants through a partnership with C17 Council, the Children’s Cancer and Blood Disorders group in Alberta, with a 5th coming soon

 

 

Over the past 10 years, the ECFC have learned from patients this cancer is most often overlooked as it mimics growing pains, sports injuries or an inflammatory condition, delaying diagnosis with devastating consequences. We knew we had to do something about increasing awareness within the medical community. In 2017, the Ewings Cancer Foundation of Canada produced Make It Stop, the first and only professional feature length documentary (47 minutes) about Ewing sarcoma in the world to date. Shot and produced in Canada, it is the very first educational tool created for front line health care practitioners who may or may not be familiar with ES, including chiropractors, sports and massage therapists, radiology and the rheumatology communities to name a few. Featured in this film are Drs. Adam Shlien, David Malkin and Abha Gupta at SickKids, Toronto; Dr. Jason Berman in Dalhousie University, Halifax; and Dr. Poul Sorensen at the BC Cancer Care Centre, Vancouver.

 

Please view this film here: https://www.youtube.com/watch?v=WYavC9GZpeg. We invite your comments and feedback once you do! We know that knowledge is power and with that power we can help stop this devastating cancer from taking the health and lives from society’s most vulnerable, the young. We ask you to include this documentary in your newsletters, industry publications, medical workshops, conferences, lectures, and/or symposiums and educational events for all registered rheumatologists across Canada.
Early detection is vital and can make the difference between life and death.

 

 

It is our hope we can work together to increase awareness for Ewing sarcoma especially within the Rheumatology Sector.

 

 

With sincere appreciation,

 

 

 

Tina Pernica
President & Founder
Ewings Cancer Foundation of Canada
Charitable Registration # 83833 0025 RR0001

O: 905-737-0127

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CYP-C Research Champion Webinars: An Introduction to CYP-C Institutional Reports – AKA – How to access your own data!

Topic: An Introduction to CYP-C Institutional Reports – AKA – How to access your own data!

Date: Friday, February 23, 2018
Time: 12:00 pm, Eastern Standard Time
For webinar information, contact Randy Barber in the C17 Office (randy.barber@AHS.ca)


Research Champion Webinars (2018)

The objective of this webinar series is to provide members of the Canadian pediatric cancer community a broad understanding of how to access and utilize the Cancer in Young People in Canada data for research purposes. This series will include an overview of how to (1) develop an appropriate research question, (2) complete the data access process and (3) perform basic data manipulation and analysis using SAS and Microsoft Access. The webinars will be delivered once per month over the 2018 calendar year. We look forward to your participation!

Past webinars are available on the C17 website under committees>CYP-C

CONFIRMED (2018; times are noon EST unless stated)
Institutional Reports (Feb 23)

FORTHCOMING (2018)
Flat File Reports
Data Manipulation in Access

PAST

Past webinars are available on the C17 website under committees>CYP-C
1. pdf-icon.gif Developing a Research Question – L Sung

2. pdf-icon.gif Overview and Requesting Data – S Badour, E Martineau, R Barber
video.JPG 

3. pdf-icon.gif Power Literature Searching – E Uleryk    video.JPG 
pdf-icon.gif Power Search PubMed [reference materials]

4. pdf-icon.gif Using SAS to analyze CYP-C data: An introduction – J Pole    video.JPG 

5. pdf-icon.gif Using SAS to analyze CYP-C data: Advanced – J Pole    video.JPG 

6. pdf-icon.gif Grant Writing Tips and Tricks – L Rosella    video.JPG 

7. pdf-icon.gif SAS Procedures – J Pole    video.JPG 

8. pdf-icon.gif Data Cleaning – G Giuseppe   video.JPG 

9. pdf-icon.gif GIS for CYP-C Research – C Nielsen  video.JPG 
excel.png Test Data [reference materials]

10. pdf-icon.gif SIOP2017 Census Geography – J Pole  video.JPG  

11. pdf-icon.gif Data Analysis I – J Pole  video.JPG 

12. pdf-icon.gif Data Analysis II – J Pole  video.JPG 

Get CME credits for keeping up on your journal reading – BESTBITS.ca is an accredited online Peds hem/onc journal club. See post for link to sample issue

BestBits.ca Pediatric Hematology Oncology Journal Review and Virtual Journal Club

BestBits.ca Journal Review is a synopsis of current literature in Pediatric Hematology & Oncology.  BestBits Pediatric Hematology Oncology Virtual Journal Club discusses featured articles from each of the Journal Review issues. The aim is to create an open access online interactive learning resource of relevant current literature for Pediatric Hematology/ Oncology health professionals and facilitate practice of journal screening, reading, summarizing and critical appraisal.

The August/September edition of BestBits.ca is now available online and as a free PDF download.

Virtual Journal Club: Featured articles are discussed in our Online Journal Club.

CME credits for both tracking journal reading and participation in journal club

REGISTRATION NOW OPEN for the C17 Next Generation of Early Phase Trials: Moving the Bar in Pediatric Oncology workshop (04-Nov- 2017, pre-session meeting at CCRA conference in Vancouver)

 

C17 “Next Generation of Early Phase Trials: Moving the Bar in Pediatric Oncology” educational workshop will be held on Saturday, 4 November 2017 in Vancouver, BC. The workshop is in response to the C17 DVL needs assessment that was completed last year; members from all C17 DVL sites and PROFYLE clinical site leads are encouraged to attend.

The workshop is a full day, pre-session workshop at the CCRA Canadian Cancer Research Conference. We hope that most attendees at our workshop will take the opportunity to attend the full conference as well.

The workshop will be designed to educate investigators on traditional models of early phase trials as well as newer approaches to drug development. We will also cover regulatory, ethical, advocacy and access aspects of early phase trials. The workshop will proved education, discussions, panels and time for questions.

Travel and accommodation booking information will be emailed to you upon completion of the registration.

 

 

Stay-tuned for funding and registration information for the C17 “Next Generation of Early Phase Trials: Moving the Bar in Pediatric Oncology” educational workshop (04-Nov-2017, BC)

C17 “Next Generation of Early Phase Trials: Moving the Bar in Pediatric Oncology” educational workshop will be held on Saturday, 4 November 2017 in Vancouver, BC. The workshop is in response to the C17 DVL needs assessment that was completed last year; members from all C17 DVL sites and PROFYLE clinical site leads are encouraged to attend.

The workshop is a full day, pre-session workshop at the CCRA Canadian Cancer Research Conference. We hope that most attendees at our workshop will take the opportunity to attend the full conference as well.

The workshop will be designed to educate investigators on traditional models of early phase trials as well as newer approaches to drug development. We will also cover regulatory, ethical, advocacy and access aspects of early phase trials. The workshop will proved education, discussions, panels and time for questions.

If our fundraising is successful, our goal is to help provide some funding to C17 DVL participating centres to allow investigators and senior research staff to attend.

Registration will be live next week.

9th Annual Interaction Conference Sept 22-23 in Toronto: an integrated industry and academic conference targeted towards those who manage or direct projects related to oncology clinical trials (www.interaction-canada.ca)

On behalf of my fellow conference organizers, I would like to bring your attention to the ninth annual Interaction Conference – an Academic-Industry Cancer Trials meeting that will be held at the MaRS building in Toronto on September 22-23, 2017. The aim of this conference is to bring together cancer clinical trials staff from academia and pharma for a two day meeting. The meeting is being organized to cater to the needs of clinical trials staff, including project directors, project managers, CRAs, data coordinators, nurses, monitors, regulatory officers and administrators.

Important goals of this meeting are to foster closer cooperation and understanding between academia and pharma staff in the conduct of cancer studies.

Further information and a registration link can be found at www.interaction-canada.ca

Please pass along to others who may be interested. Do not hesitate to contact us with any questions.

I look forward to seeing you in September.

Kind Regards,

Jasmine Grant, MEd, CCRP
Education Specialist Lead
Cancer Clinical Research Unit
Princess Margaret Cancer Centre
(416) 946-4501 x3465
Jasmine.grant@uhn.ca

 

 

YOU HAVE BEEN MISSING OUT, if you are not a part of the CYP-C Research Champions program. [Video & Publication Opportunity]

YOU HAVE BEEN MISSING OUT, if you are not a part of the CYP-C Research Champions program. Please watch our [VIDEO] update and think about joining for opportunities to publish and more! [CYP-RC Publication Policy]

We also have a meeting booked at SIOP in Washington DC (Sunday, October 15 from 13:30 – 17:00), for those in attendance.

Une version française du cours de formation de CITI sur la division 5 est maintenant disponible; les institutions du C17 ont accès via l’inscription du C17 au N2

Remarque: Le C17 est membre N2 (Réseau des Réseau): les institutions du C17 ont accès à toutes les ressources d’enseignement et de formation N2, y compris la formation  CITI.

Le Cours de CITI sur la Division 5: Drogues destinées aux essais cliniques sur des sujets humains de Santé Canada a été traduit en français. Cette traduction a été possible grâce a l’aide financière généreusement offerte par le FRSQ. Vous pouvez y accéder en consultant le site Web de CITI: http://n2canada.us14.list-manage2.com/track/click?u=3701881b24851f487859ab8c8&id=b17362d464&e=33118d4f3d.

The Health Canada Division 5: Drugs for Clinical Trials Involving Human Subjects CITI Course has been translated into a French version. The FRQS has generously provided financial support to make this translation possible. It can now be accessed through the CITI website: http://n2canada.us14.list-manage2.com/track/click?u=3701881b24851f487859ab8c8&id=fc3e54cb50&e=33118d4f3d.

 

SAVE-THE-DATE: C17 “Next Generation of Early Phase Trials: Moving the Bar in Pediatric Oncology” educational workshop (Saturday, 4 November 2017)

C17 “Next Generation of Early Phase Trials: Moving the Bar in Pediatric Oncology educational workshop being held on Saturday, 4 November 2017 in Vancouver, BC. The workshop is in response to the C17 DVL needs assessment that was completed last year as we expanded the C17 DVL network across Canada from 8 to 11 sites. While many investigators and research staff have had experience or education in early phase trials, here was a need identified to provide education and mentorship to research staff conducting early phase trials. With the development of pediatric precision medicine trials in Canada, the need will be even greater.

The workshop is a full day, pre-session workshop at the CCRA Canadian Cancer Research Conference. We hope that most attendees at our workshop will take the opportunity to attend the full conference as well.

The workshop will be designed to educate investigators on traditional models of early phase trials as well as newer approaches to drug development. We will also cover regulatory, ethical, advocacy and access aspects of early phase trials. The workshop will proved education, discussions, panels and time for questions.

Our goal will be to help provide some funding to C17 DVL participating centres to allow investigators and senior research staff to attend.

 

More details will be circulated once available.

 

C17 Education Rounds Videoconference: The Hospital at Home (H@H) Program by Dr. Lucie Lafay-Cousin

The Hospital at Home (H@H) Program at the Alberta Children’s Hospital

Dr. Lucie Lafay-Cousin MD, Pediatric Oncologist, Alberta Children’s Hospital

Wednesday March 15, 2017, 12:00 – 13:15 MST

Objectives:

  1. Describe the H@H initiative
  2. Report on activities and results
  3. Discuss the practical aspects of program development

This event will be recorded by AHS Digital Media Services and will be available to view after the presentation date. 

Telehealth host site: Stollery Children’s Hospital

Telehealth Registration:  Book a room with your institution’s Videoconference Dept. and then follow instructions in the e-mail included with this poster (see e-mail below) in order to register online with Alberta Health Services @ www.vcscheduler.ca/ahs
If you need help please contact our Telehealth team atedm.telehealthscheduling@albertahealthservices.ca

 

To obtain credit certification, please make sure you complete and submit your evaluation form.