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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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CAN YOU RECOGNIZE THE SYMPTOMS OF THE DICER1 SYNDROME? New DICER1 online resource physicians and patients, including variant maps, biobanking instructions and genetic testing. www.dicer1syndrome.ca

With over 50 years of combined research experience, clinician-researchers Dr. William Foulkes and Dr. David Malkin, are pleased to introduce a new resource for patients and healthcare professionals interested in learning more about DICER1 syndrome. Until now, our research has contributed to allowing caregivers recognize the major features of the syndrome, counsel families about the mutation status in their families, and offer surveillance for certain conditions that can occur in those carrying DICER1 mutations. However, due to the rarity of DICER1 syndrome and related tumors, the study of DICER1 syndrome has been limited by the number of cases which occur. This Canadian research network will work to provide an international resource for the dissemination of the information that has been learned about DICER1 syndrome (available in English, French, and Spanish), a DICER1 sample database available for researchers at no cost, and a tool for broadening our reach for case and specimen collection. Please visit our website (www.dicer1syndrome.ca) or contact Evan Weber (evan.weber2@mail.mcgill.ca) for more information.

HELP NEEDED – Please circulate/post: Survey for any Canadian ever approached to participate in a clinical trial and either declined, did not qualify or participated (http://www.bccrin.ca/survey​)

*** Enrollment is struggling and we are still 1200 responses away from our goal of 2000 completed surveys by March 31, 2017.   Please help by distributing the survey link where patients/public can find it.  There are recruitment materials available for use on your websites, in paper or electronic mailings and social media.  French translations of the materials and survey are available. If you are interested in helping us provide patients and participants with this opportunity please contact the project manager Alison Orth, contact details below.  Your support is needed and very much appreciated! ***

 

Any Canadian who has ever been approached to participate in a clinical trial and either declineddid not qualify or participated is invited to respond.

Results from this survey will be used to inform researchers, research sponsors and policymakers across Canada to aid in improving study design, clinic operations and research site procedures to reduce barriers to research participation and improve the experience for study participants. These results will be shared with participating sites and various knowledge translation pieces will be made available for your use.

The link to the online survey is http://www.bccrin.ca/survey

All materials have been approved by the UBC Behavioural Research Ethics Board.  Please check with your site/institution regarding which approvals are required to post the survey link.  We will help you to tailor the best approach for your site and support you throughout your participation.

Alison Orth, BBA, CCRC
Project Manager, BCCRIN – BC AHSN
aorth at bccrin.ca

 

#KidsCancerPain Survey: 1 week left for parents and caregivers to contribute. Please circulate/post.

Over 200 parents/caregivers have participated so far – thank you! Please continue to spread the word about the campaign & survey (which is open for until July 20).  The survey link is: https://www.surveymonkey.com/r/KidsCancerPain and can be easily found by searching for #KidsCancerPain and survey.

Share and retweet in your networks and over social media to help promote the survey and the resource/campaign.

Contact the researchers (jennifera.parker (at) iwk.nshealth.ca) for campaign materials for distribution; click here for a survey invitation poster, campaign poster, and samples of digital campaign files can be found here and here.

 

What is #KidsCancerPain?

Over the next 12 months, #KidsCancerPain will be bringing parents the very best, cutting-edge research evidence about children’s cancer pain – what causes it, how to assess it, how to treat it, common myths, and more! This information will be shared with parents in a series of blogs, videos, images, Facebook posts, and Twitter chats, all posted and shared on the Cancer Knowledge Network website (https://cancerkn.com/) and social media. They will be studying the reach of the campaign and its impact on parents.

You will be learning more about #KidsCancerPain, but in the meanwhile these researchers are asking you to share and promote in your networks and on social media. The major focus right now is getting as many parents/caregivers who have a child with cancer currently in treatment, remission or who is a survivor to complete the survey. The survey takes 10-15 min to complete and there is a chance to win 1 of 3 $250 Visa gift cards. This is a critical component of the evaluation of the campaign.

#KidsCancerPain – Help Christine Chambers and Jennifer Stinson circulate a parent/caregiver survey to study the impact of their just-launched “Making Cancer Less Painful for Kids” Campaign

Over the next 12 months, #KidsCancerPain will be bringing parents the very best, cutting-edge research evidence about children’s cancer pain – what causes it, how to assess it, how to treat it, common myths, and more! This information will be shared with parents in a series of blogs, videos, images, Facebook posts, and Twitter chats, all posted and shared on the Cancer Knowledge Network website (https://cancerkn.com/) and social media. They will be studying the reach of the campaign and its impact on parents.

You will be learning more about #KidsCancerPain, but in the meanwhile these researchers are asking you to share and promote in your networks and on social media. The major focus right now is getting as many parents/caregivers who have a child with cancer currently in treatment, remission or who is a survivor to complete the survey. The survey takes 10-15 min to complete and there is a chance to win 1 of 3 $250 Visa gift cards. This is a critical component of the evaluation of the campaign.

How can you help?

Cancer Pain Card Front

Cancer Pain Card Back

“Making Cancer Less Painful for Kids” campaign #KidsCancerPain – in partnership with the Cancer Knowledge Network (North America’s most widely read online cancer resource), and funded by a research grant from the Canadian Cancer Society. The work brings together a team of internationally known health researchers, clinicians, patients, and supporting organizations and builds on our successful #ItDoesntHaveToHurt initiative.

 

3CTN Network Pulse Newsletter – April 2016 (http://eepurl.com/bWMxLH). Includes resources for Public Patient Involvement in clinical trials

Taken from the April 2016 3CTN Network Pulse Newsletter:  http://eepurl.com/bWMxLH

Public and Patient Involvement
3CTN Continues to Support PPI Site-Level Activities

A key recommendation of the SAB’s 18 month review was for the 3CTN CC and the Lay Representative Advisory Committee (LRAC) to continue to support the roll out of PPI activities and roles across Network sites. To date, we have made the following tools and documents available to sites:

  • 3CTN PPI Website, which includes:
    • PPI Toolkit for Site Staff
    • PPI Toolkit for Lay Representatives
    • PPI News – Updated Monthly and has open call to sites to share their local PPI activities and events
  • 3CTN Guide to PPI
  • Framework of Community Representation on Health Research Committees

 

Further to these tools, this month 3CTN is releasing the new “PPI Reference Tool” and introducing the “Ask Me” Ambassador PPI role. Each of these new tools are intended to provide sites with concrete ways to incorporate PPI activities locally, especially for sites that might be struggling with way to adapt PPI to their local needs or goals.

  • The PPI Reference Tool:This new tool has been added to the PPI Toolkit for Sites and is a “Cole’s notes” walkthrough of all the steps involved in developing and implementing a PPI role on local institutional committees. This tool also acts as across reference guide between the “PPI Framework” and the 3CTN PPI Guide so that site staff can quickly navigate relevant document sections that may help with each step of implementing a PPI role.
  • Ask Me Ambassador PPI Role: Sites that are currently in the process of their local “Ask Me” roll out may wish to add the Ask Me Ambassador role to the roll out plan. This PPI role is covered in detail as part of the new PPI Reference Tool and represents a great opportunity for sites to involve local patients that may wish to act as trial advocates or peer mentors for new patients that are considering trial participation.

The 3CTN CC and LRAC continue to increase the number of tools available to sites to implement PPI activities which will allow the Network to leverage the positive impact of PPI on recruitment and other clinical trial activities. With this month’s new tools Network sites can unlock the value of PPI locally and then share their local success stories with the 3CTN CC.

Do you have patients who have been asked to participate in a clinical trial? Canadian Researchers need their feedback (www.bccrin.ca/survey). See post and http://www.bccrin.ca/whats-new/canadas-clinical-research-community-needs-public-input/

Have you ever been asked to participate in a clinical trial? Canadian researchers need your feedback!  www.bccrin.ca/survey

 

BCCRIN is conducting a Canadian Clinical Research Participation Survey.  Clinical researchers in Canada would like to hear from patients and study volunteers about their experience with clinical trials.  Any Canadian who has ever been approached to participate in a clinical trial and either declined, did not qualify or participated is invited to respond.  The survey is web-based and completely anonymous.  Results from this survey will be used to inform researchers, research sponsors and policymakers to aid in improving study design, clinic operations and research site procedures in order to reduce barriers to research participation and improve the experience for study participants in Canada.  These results will be shared with N2 members and various knowledge translations pieces will be made available for your use.

The link to the survey is http://www.bccrin.ca/survey

BCCRIN is seeking your help to post this survey link and the invitation where patients/public can find it.  There are materials available for use on your websites, in paper or electronic mailings and social media.  French translations of the materials and survey are in progress but not yet available.  Materials below have been approved by the UBC Behavioural Research Ethics Board and provided your site is not actively enrolling for this survey, local REB approval may not be required.  Please check with your institution regarding which approvals are required to post the survey link.

See promotional materials listed below:

 

Recruiting New Lay Representatives to the Canadian Cancer Clinical Trials Group

The Canadian Cancer Clinical Trials Group is looking to recruit patients, caregivers and others affected by cancer to join its Lay Representatives Committee and Investigational New Drug Committee.

The role of Lay Representatives in the Canadian Cancer Trials Group is to represent the perspective of patients and their families, and the public at large, in the development and delivery of clinical trials. The goal is to team with health care professionals/researchers to advance outstanding research in the treatment, care, and prevention of cancer to improve patient outcomes.

Applicants should have:

  • An interest in cancer research
  • Experience with cancer or caring for someone with cancer
  • An ability to understand the scientific discussions that take place during meetings and/or be willing to become familiar with relevant research and medical language
  • Good communication skills and an ability to listen to others and be comfortable and confident constructively expressing their own views from a consumer perspective
  • The ability to commit the time to participate fully in Lay Representatives Committee and IND Committee activities, including preparing for and attending the Canadian Cancer Trials Group’s Annual Spring Meeting of Participants, quarterly teleconferences, telephone and email discussions as needed
  • Electronic communication skills, including basic computer skills and access to the internet

For more information and to access application form, please go to:  www.ctg.queensu.ca/public/lay-representatives-committee-recruitment.

Would you like to understand why families decline participation in clinical trials? Read this press release to learn more about the BCCRIN anonymous survey for patients/families who have declined or participated in clinical trials.

 

Clinical researchers would like to learn about Canadian’s experience with clinical trials.

The Canadian Clinical Trials Coordinating Centre (CCTCC) is pleased to partner with the BC Clinical Research Infrastructure Network (BCCRIN) on the national expansion of the BC Clinical Trials Participation Survey. This survey recognizes the importance of engaging and learning from patients and the public about the clinical trial process. From the BC only data, researcher have found that patients/families that decline participation in clinical trials have a very different understanding of the clinical trial process than those that participated in a clinical trial.

Access the full press release here.

If you have participated in a clinical trial, were asked to participate and declined, or if you are the parent of a child who has been asked or has participated, your feedback is important to the future of research in Canada.

The anonymous survey can be accessed at: www.bccrin.ca/survey

C17 addendum: please note this survey does not appear to work in older browsers.

Canadian Medical Association Journal (CMAJ) helps spread the word about ItStartsWithMe.ca

CMAJ reposted Dawn Richard’s ItStartsWithMe.ca article on the CMAJ Patient Blog — sharing/forwarding links are at the bottom of the re-post below.

Dawn Richards provides project management consultant services to the Canadian organization Network of Networks (N2). She also works as a patient consultant for other organizations.

Have you ever wondered what clinical trials are? How they work? What the potential benefits and risks are? If a clinical trial is an option for you or someone you know we hope that a new website called Itstartswithme.ca (Cacommenceavecmoi.ca) will answer a number of these questions for you, and help you make an informed decision about clinical trials. The website also includes some questions to ask if you’re interested in becoming a participant as well as what to expect, and a large glossary of terms.

ItStartsWithMe.ca was created by the Network of Networks (N2), a Canadian organization that represents organizations that carry out clinical research (which includes clinical trials). N2 helps organizations to share best practices and to facilitate more efficient and high-quality research, integrity of clinical practices and accountability. To date, N2 has mostly been focused on clinical research professionals, however the new website represents a start to N2’s interactions with the public about clinical research. We hope that this site helps start more of a dialogue about what clinical research is and why it is important.

ItStartsWithMe.ca was originally envisioned and planned by the Clinical Trials Education and Awareness Committee of N2. I joined this Committee as a project manager in October 2014, and thought this project was perfect for me- given that I am also a person who lives with rheumatoid arthritis and know a number of people who have been in clinical trials. My project manager role was to ensure that the website was developed and that people would understand it, and want to use it as a trusted, objective resource. Initially, we reached out to a number of patients and caregivers, with ten from across Canada agreeing to join the Committee in its journey to build a website. These patients and caregivers represent different demographics and disease experiences from across the nation, and they each bring a valid perspective to which our Committee listened and continues to listen. Many of these individuals have either participated in a clinical trial or they have known a loved one who has been in a clinical trial. They have provided guidance on language, how things look, thoughts on terminology, and even shared practical tips for people who may be participating in a clinical trial. They are all supportive of the role that clinical trials play in bringing new medications, treatments, and medical devices to Canadians.

We hope that you will visit Itstartswithme.ca and find it useful. From simply learning what clinical trials are, including all of the phases, who is part of a clinical trial team, potential benefits and risks about clinical trials, as well as using the glossary of terms, we believe that the website provides a lot of useful information that is easily understandable. The individuals behind ItStartsWithMe.ca believe that clinical trials are an important part of bringing new innovative therapies to people living with illness, and want to help others see this point of view too.