CNTRP Priority Setting Survey

 

We are interested in learning your views on what topics should be researched in transplantation and donation in order to improve treatment and quality of life of transplanted patients and patients waiting for a transplant (in solid organ, tissue and stem cell transplant). Your experiences as a patient, caregiver, researcher and or healthcare professional will help us to identify the top research priorities in transplantation and donation within the Canadian National Transplant Research Program (CNTRP) and will also inform agencies and organizations that fund research in Canada. Involving patients in setting research priorities is a way to enhance the quality, relevance and transparency of medical research.

 

A research team has created a questionnaire to address this subject.  To answer these questions, we ask you to participate in an Online survey that would will take approximately 10 minutes to complete. The aim of this survey is to gather patients’, caregivers’, researchers’ and clinicians’ views on the research topics that should be conducted in the field of organ transplantation and donation in order to improve the treatment and the quality of life of transplanted patients and patients waiting for a transplant. 

By clicking the following link, you consent to participate to this project and you will be redirect to the survey:

TAKE THE SURVEY IN FRENCH

 

Additional information on the research project is available on our website at:

http://ethiquetransplantation.com

http://www.cntrp.ca

 

If you have any questions or would like any additional information, please contact:

 

Dr Marie-Chantal Fortin, M.D., Ph.D., F.R.C.P.C.

Principal researcher

Tel: 514-890-8000 ext. 25712

marie-chantal.fortin.chum@ssss.gouv.qc.ca

 

Mr Fabian Ballesteros                                     

Research assistant                                          

Tel: 514-890-8000 ext. 26051                         

fabian.ballesteros.chum@ssss.gouv.ca        

 

We thank you for your participation. Your responses are essential to foster a meaningful partnership and collaboration with the CNTRP.

ADDITIONAL CONSIDERATIONS:

 

  • Transplantation and donation affects people’s lives in many ways. While answering these short questions, please think about your own experiences with transplantation or donation.

 

  • This survey is hosted in a secured web server from the Population Research Laboratory of the University of Alberta with whom we work together.

 

  • There is no guarantee of a personal benefit to you from your participation in this research. The survey results will enrich the preliminary data obtained during a workshop held in August 2014 and will contribute to the emerging evidence on which the patient engagement strategy will be developed. Further, the cumulative data will be utilized in agenda-building for a national workshop that will be held in autumn 2015.

 

  • By participating in this research, you will not experience any personal risks or disadvantages, only the time taken to complete the survey.

 

  • Your participation is completely anonymous. The data from this survey or in combination with data from other projects could be shared with Regulatory Organizations of Canada or other countries or with associated funding agencies. This sharing of information implies that your data could be transmitted to other countries than Canada. However, researchers and funding agencies will respect the confidentiality rules in force in Quebec and Canada, and this in all countries. The data will be securely stored for a maximum 5 years after the end of the project at the office of the principal researcher in the CRCHUM.

 

  • Your participation to this project is voluntary, so you are free to refuse to participate. However, if you are unable to complete the survey in full, please note that your responses will still be retained.                      

 

  • This research is publically funded through grants from the Canadian National Transplant Research Program and the Canadian Institutes of Health Research (CIHR). This project has received ethics approval from the Centre hospitalier de l’Université de Montréal research ethics board.

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