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 declined, did 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
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.
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.
The Aslan Project is seeking a Pediatric Hematology/Oncology Clinical Director for a Program in Jimma, Ethiopia.
The posting can be found here.
Inspired by a young cancer patient from Ethiopia, Temesgen Gamacho, The Aslan Project was founded by a group of doctors, nurses, and family members of children with cancer who believe passionately that no matter where they are born, all children deserve a chance at surviving cancer. Their work is driven by the core belief that sustainable improvements in pediatric and adolescent cancer care in developing countries are possible by establishing and empowering a broad network of local stakeholders to become champions of change.
Together with the Ethiopian partnership, The Aslan Project is building the first comprehensive national program for children with cancer and blood diseases using a step-wise approach with education of the health care providers at the core of the initiative. Accordingly, they have created a fellowship program in pediatric hematology and oncology at TASH to provide the necessary training while assisting in the progressive creation of all the clinical programs that are necessary for the comprehensive care of young cancer patients. A Clinical Director is sought to ensure that the development and implementation of the pediatric hematology/oncology program and the delivery of medical services through that program meet the highest standards of clinical, supportive, and palliative care.