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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.

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:

 

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.

POST/CIRCULATE: Free Forum on Cancer Research for Patients, Survivors, Families and General Public (Montreal)

*** UPDATE: Posters available for posting/circulating in both English and French

Full CCRC Email AD_English

Full CCRC Email AD_French

The Community Forum was created to provide a unique opportunity for the public and the cancer research community to engage and interact. The target audience is the lay public, with a focus on cancer patients, survivors, and their families. The Forum is open to members of the public and there is no cost to attend the event.

Register today at ccra-acrc.ca/index.php/ccrc-community-forum-home

Come to hear about the latest research developments from some of Canada’s leading cancer researchers. At this forum you will also have an opportunity to meet and ask questions of experts in the fields of:

Brain Cancer ♦ Breast Cancer ♦ Leukemia ♦ Lung Cancer ♦ Melanoma ♦ Pediatric Cancer ♦ Prostate Cancer ♦ Cancer Survival Rates ♦ Immunotherapy

DATE: Monday, November 8, 2015 from 6:00-8:30 pm
LOCATION: Hôtel Bonaventure Montréal – 900, de La Gauchetière, Ouest , Montréal  involvement

IT STARTS WITH ME! Clinical trial information website for patients launched by N2

Are you looking for a trustworthy website about clinical trials? Are you interested in learning about participating in a clinical trial? A new website (www.itstartswithme.ca/  www.cacommenceavecmoi.ca) about clinical trials was developed by patients and caregivers who have participated in a clinical trial or have had a loved one participate in a clinical trial and by people who work in clinical trials and research. The website tells you everything you need to know about clinical trials, things to think about or ask before you decide to participate, your rights as a person who is volunteering in a clinical trial, and has a glossary of terms for you. The site was created by the Network of Networks (N2– an organization that represents organizations that do clinical research and trials in Canada.

It Starts with Me has arrived! N2 is excited to announce the launch of its website created for the public to learn about clinical research and trials – www.itstartswithme.ca/  www.cacommenceavecmoi.ca! The site was developed with leadership from our Clinical Trials Education and Awareness Committee and also supported by a CIHR SPOR Patient Engagement Collaboration Grant that facilitated a valuable partnership with patients and caregivers to inform the site.

N2 hopes you will use this site in your work and we encourage you to link to the site, and/or place the link on your organization’s website. To help you spread the word about the site, N2 developed a template communication for you (first paragraph above) to share either internally with your own colleagues, or to post on your website and share in your own external communications.

It is important to N2 how the website is received and to ensure information is accurate and up to date. If you have any comments, questions or concerns, please provide us with feedback here. N2 is planning to develop and growth the website, for example with a video that is underway about clinical research, and some downloadable resources that are in production.

Join the CCAN MOSAIIC Team — collaboratively address the needs of family caregivers of children across Canada

The CCAN MOSAIICC Working Group is Expanding!

Mobilizing Opportunities to Systematically Address Issues Impacting Caregivers of Children (MOSAIICC) is an initiative of the Canadian Cancer Action Network (CCAN), a membership driven umbrella network comprised of 96 diverse member organizations from across Canada.  www.ccanceraction.ca

MOSAIICC is a collaborative project focusing on the implementation of an interactive national MOSAIICC Information Portal to address the financial hardship and highest priority needs faced by families of children and youth with life-threatening or life-limiting illness.  This virtual system, or centralized knowledge centre, will allow families to access practical, tailored information as a support tool to help further navigate their financial issues.

Currently, the MOSAIICC Working Group is expanding.  We are seeking new members from national or selected regional organizations, as well as individuals with a personal connection to the issue.  We welcome the interest and participation by C-17 members in this important initiative.  If you wish to join this dynamic team, or learn more about MOSAIICC, please contact Susan Turner, MOSAIICC Project Consultant, by August 21st 2015 at: susan@turnerassociates.ca