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Frustrated by regulations? Here’s your opportunity to provide feedback to Health Canada. Take this 10 question survey to help inform future directions of the Initiative to Streamline Clinical Trials (ISCT) Working Group

Initiative to Streamline Clinical Trials: Have The Guidelines Helped Cut Through the Red Tape?

Completing this 10-question survey will inform future directions of the Initiative to Streamline Clinical Trials (ISCT) Working Group, and provide information to be presented in discussions with Health Canada. We appreciate your support in taking a minute to complete the survey. Even if you are unfamiliar with the ISCT guidelines or have not implemented them, your responses will help shape future work on this initiative. The survey is anonymous and results will be aggregated. Click the link below to start the survey.
www.surveymonkey.com/r/ISCTGuidelines
Background
In 2011, the Canadian Cancer Research Alliance (CCRA) report on the State of Cancer Clinical Trials In Canada identified the magnitude of the threat to the conduct of oncology clinical trials. The report noted that with falling performance metrics, increasing complexity and workload, and an increasingly onerous regulatory environment, clinical trials were at risk, and observed that “Without clinical trials, the outcomes of cancer patients will not continue to improve”. One of the recommendations in the report recommended engaging with Health Canada and other key stakeholders to foster agreement in appropriate interpretations of the Health Canada Food and Drug Regulations and ICH Good Clinical Practice (GCP) guidelines.

In response, the Initiative to Streamline Clinical Trials (ISCT) Working Group was organized in 2012, and included members who are experts in clinical trial conduct across many therapeutic areas. The primary objective of the ISCT was to develop specific, pragmatic, and practical interpretations of current regulations, laws and guidelines, in order to facilitate, rather than limit, Canadian clinical trials, by expanding on recommendations such as those of the CCRA and OECD. The guidelines were finalized in February 2014 and are available at http://n2canada.ca/isct/.

Since the 2011 CCRA report, the ISCT Guidelines has been one of many initiatives underway nationally to address threats to the clinical trial enterprise. While results are promising, understanding of the current environment as well as the implementation and impact of the ISCT Guidelines by academic Investigators, Institutions, and Sponsors is needed to determine future actions required.

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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

 

Ensure that pediatric oncology is part of the CIHR research framework for end-of-life care: take the CCRA survey http://fluidsurveys.com/surveys/ccra/final-peolc-survey-english/

The Canadian Cancer Research Alliance, under the leadership of the Canadian Partnership Against Cancer, the CIHR Institute for Cancer Research and other key stakeholders from across Canada, is working on the development of a research framework for palliative and end-of-life care. This framework will help to ensure a coordinated approach among multiple cancer research funders in Canada to advance research in palliative and end-of-life care.

As a key stakeholder in this area, we are inviting you to participate in a brief survey (approximately 20 – 30 minutes) to provide your views related to palliative and end-of-life care research in Canada. The information you provide will help to develop this research framework. We recognize that you may receive the survey more than once as we are using multiple distribution lists. We apologize for the inconvenience.

You can access the survey through the following link: http://fluidsurveys.com/surveys/ccra/final-peolc-survey-english/. Please be aware that closing the web page/browser containing an active survey may result in losing your data. The survey will be open until July 11, 2016. If you have any questions or problems accessing the survey, please contact Diana Soifer at diana.soifer@partnershipagainstcancer.ca; Tel. (416) 915-9222, ext. 5819.

 

This is not a survey on Medical Assistance in Dying.

#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.

 

Survey on palliative and end-of-life care research / Une enquête de recherche pour les soins palliatifs et de fin de vie

 

La version française suit

The Canadian Cancer Research Alliance, under the leadership of the Canadian Partnership Against Cancer, the CIHR Institute for Cancer Research and other key stakeholders from across Canada, is working on the development of a research framework for palliative and end-of-life care. This framework will help to ensure a coordinated approach among multiple cancer research funders in Canada to advance research in palliative and end-of-life care.

 

As a key stakeholder in this area, we are inviting you to participate in a brief survey (approximately 20 – 30 minutes) to provide your views related to palliative and end-of-life care research in Canada. The information you provide will help to develop this research framework. We recognize that you may receive the survey more than once as we are using multiple distribution lists. We apologize for the inconvenience.

 

You can access the survey through the following link: http://fluidsurveys.com/surveys/ccra/final-peolc-survey-english/. Please be aware that closing the web page/browser containing an active survey may result in losing your data. The survey will be open until July 11, 2016. If you have any questions or problems accessing the survey, please contact Diana Soifer at diana.soifer@partnershipagainstcancer.ca; Tel. (416) 915-9222, ext. 5819.

 

This is not a survey on Medical Assistance in Dying.

 

The World Health Organization defines palliative care as an approach to care that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. End-of-life care is part of palliative care and is used to describe the support and medical care given during the time surrounding death.


 

L’Alliance canadienne pour la recherche sur le cancer, sous la direction du Partenariat canadien contre le cancer, de l’Institut de recherche sur le cancer de l’IRSC et d’autres intervenants clés de toutes les régions du Canada, a entrepris l’élaboration d’un cadre de recherche pour les soins palliatifs et de fin de vie. Ce cadre contribuera à assurer une approche coordonnée entre plusieurs commanditaires de la recherche sur le cancer au Canada pour faire avancer la recherche en soins palliatifs et de fin de vie.

 

Comme vous êtes un intervenant clé dans ce domaine, nous vous invitons à prendre 20 à 30 minutes de votre temps pour nous donner votre point de vue sur la recherche en soins palliatifs et de fin de vie au Canada. Les informations que vous fournirez nous aideront à élaborer ce cadre de recherche. Nous sommes conscients qu’il est possible que vous receviez plusieurs fois cette enquête car nous utilisons plusieurs listes de distribution. Veuillez nous excuser pour toute gêne occasionnée.

 

Vous pouvez accéder à l’enquête en cliquant sur le lien suivant : http://fluidsurveys.com/surveys/ccra/final-peolc-survey-french/. Sachez que si vous fermez la page Web ou le navigateur dans lequel vous êtes en train de répondre à l’enquête, il est possible que vous perdiez vos données. L’enquête sera accessible jusqu’au 11 juillet 2016.

 

Si vous avez des questions ou rencontrez des problèmes d’accès à l’enquête, veuillez communiquer avec Diana Soifer par courriel à l’adresse diana.soifer@partnershipagainstcancer.ca, ou par téléphone au 416‑915‑9222, poste 5819.

 

Cette enquête ne porte pas sur l’aide médicale à mourir.

 

L’Organisation mondiale de la santé définit les soins palliatifs comme une approche des soins qui cherche à améliorer la qualité de vie des patients et de leur famille, face aux conséquences d’une maladie potentiellement mortelle, par la prévention et le soulagement de la souffrance, identifiée précocement et évaluée avec précision, ainsi que par le traitement de la douleur et des autres problèmes physiques, psychologiques et spirituels qui lui sont liés. Les soins de fin de vie font partie des soins palliatifs; ils désignent le soutien et les soins médicaux donnés pendant la période entourant la mort.

Who has responded to the 2016 HR Survey so far? 39% of Attending Physicians, 40% of Clinical Associates and 27% of Residents/Fellows. Contact C17 if you cannot locate your invitation.

Every two years the C17 Human Resources Committee surveys the 17 Canadian Pediatric Hematology/Oncology divisions to help plan for staffing needs.  It is crucial that all peds hem/onc trained attending physicians, clinical associates, and non-attending physicians, as well as fellows/residents training in peds hem/onc complete this survey.

If you have not received an invitation to this survey, or if you know of a peds hem/onc trained fellow/resident obtaining additional training in a different area, please contact leah.young2@ahs.ca

Results of the survey will be posted at the C17 AGM in Montreal this June.

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:

 

All physicians trained or training in peds hem/onc should have received an invitation to contribute to the 2016 C17 Human Resources Survey

Every two years the C17 Human Resources Committee surveys the 17 Canadian Pediatric Hematology/Oncology divisions to help plan for staffing needs.  It is crucial that all peds hem/onc trained attending physicians, clinical associates, and non-attending physicians, as well as fellows/residents training in peds hem/onc complete this survey.

If you have not received an invitation to this survey, or if you know of a peds hem/onc trained fellow/resident obtaining additional training in a different area, please contact leah.young2@ahs.ca

Results of the survey will be posted at the C17 AGM in Montreal this June.

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.