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Nous avons besoin de votre contribution. Ensemble nous pouvons faire une différence pour la douleur chez les enfants ! [French version of SKIP survey.]

Les membres de notre centre ont travaillé en étroite collaboration avec nos amis de l’Association canadienne des centres de santé pédiatriques (CAPHC) et plusieurs autres à travers le Canada et au-delà sur une proposition pour soutenir un nouveau réseau nommé « Solutions for Kids in Pain » (SKIP) qui signifie « Des solutions pour les enfants en douleur ».

Nous encourageons tous ceux qui ont un intérêt pour la gestion de la douleur chez les enfants de bien vouloir compléter ce sondage qui ne vous prendra que 5 minutes à remplir.

LIEN VERS LE SONDAGE :  https://surveys.dal.ca/opinio/s?s=45431

Nous utiliserons vos commentaires afin de développer un réseau qui améliorera la gestion de la douleur chez les enfants au Canada et ailleurs !

N’hésitez pas à partager cette publication dans vos réseaux également! Merci pour votre participation ! Vous pouvez également suivre nos progrès sur Twitter : @KidsinPain.

 

#PsBesoinDeFaireMal

 

 

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Inform Patients and Families about the Canadian Retinoblastoma Research Registry – see post for resource downloads and contact information

Adults affected by retinoblastoma (e.g., survivors and immediate family of those diagnosed with retinoblastoma) are invited to join the Canadian Retinoblastoma Research Registry.

The purpose of the registry is to:

  1. Share research results with retinoblastoma survivors and their families;
  2. Include a large and diverse group of retinoblastoma survivors and their families in research; and
  3. Promote research that is created and lead by retinoblastoma survivors and their families.

Please:

This study is part of the Canadian Retinoblastoma Patient Engagement Strategy led by Dr. Helen Dimaras (Scientist, SickKids). For more information visit our website or email retinoblastoma.research@sickkids.ca.

AYA-targeted YouTube resource outlining oocyte preservation https://youtu.be/wB9lfKlYReY

Please see the link below for a white board style video that outlines the process of egg/oocyte preservation for young women considering this method of fertility preservation. Targeted to AYA patients (15+).

https://youtu.be/wB9lfKlYReY

MAKE IT STOP – a documentary about Ewing sarcoma by the Ewing Cancer Foundation of Canada – debuts scheduled for Richmond Hill ON (Sept 23), Labrador City (Sept 7), St John’s NL (Sept 17) and Fall River NS (Sept 23). Richmond Hill debut features live music by Tom Corrigan

MAKE IT STOP. A DOCUMENTARY.

You are cordially invited to celebrate the Debut of our most recent project. Through this important 45 minute documentary, we will share with you the history of Ewing sarcoma, stories of people affected and hear from doctors and researchers in Canada.
It will move, inspire and educate you!

September 23rd, 2017
Cosmo Music (Cosmopolitan Music Hall)
10 Via Renzo Drive
Richmond Hill, ON

Introduction: 2:00
Film screening will begin at 2:30
Refreshments and live music by Tom Corrigan

There is no charge for admission, however donations are greatly appreciated.  Please say you’ll come and share this Debut experience with us.  RSVP at contact@ewingscancer.ca by September 1st.

We are also hosting Debuts in the following areas; contact contact@ewingscancer.ca  if you would like to attend.

  • Labrador City- Sept. 7th
  • ST. John’s NL Sept. 17th
  • Fall River NS Sept. 23rd

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.

The INUIT CANCER EXPERIENCE depicted in “Jon’s Tricky Journey” (storybook+ educational resource) by Pat McCarthy, and funded by C17 with CCCF. All sites to receive copies. See full posting for book website with previews of this stunning book.

From the author, Pat McCarthy:

 

Hello everyone! This is my first e-mail blast to family, friends and colleagues. I wanted to let you know that my book has been published by Inhabit Media and is available on Amazon.com (US),  and on Indigo books (Canada). The amazon and indigo websites say release date of Sept 1 2017, however the books should be arriving in the Inhabit Media warehouse this week, and will be available sooner. The book is bilingual; English and Inuktitut.

My website is:  www.jonstrickyjourney.vistaprintdigital.com

Inhabit Media website:  http://inhabitmedia.com/2017/06/05/jons-tricky-journey/

This book was supported with a grant from C17,  in partnership with Childhood Cancer Canada Foundation, and with support from the Children’s Hospital of Eastern Ontario.


Jon loves his life in the North. But when he feels a pain that won’t go away, he must go to a children’s hospital in the south to find out what is wrong. A doctor there tells Jon he has cancer and will have to stay at the hospital for a while.

Suddenly Jon’s life is upside down! But with a handful of tricks from the doctors and nurses, and new friends, Jon discovers ways to cope with some of the tricky parts of having cancer.

Accompanied by a resource guide for parents and caregivers, including hospital and support information, Jon’s Tricky Journey opens a conversation between Inuit children facing a cancer diagnosis and their families to help make a difficult and confusing time more manageable.

Written by Patricia McCarthy | Illustrated by Hwei Lim

ISBN: 978-1-77227-145-4 | $19.95 | 8.5″ x 8.5″ | 70 pages | Full-colour illustrations | Paperback | Bilingual Inuktitut and English

Ages 5–7

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.

 

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: