March 4, 2017 – RPES STILL muddling along.  No date set for launch of website resource for Participants enrolling in research projects.  Concerns raised in The Toronto Star continue to be worrisome....
 
November 16, 2015: Update on the Research Participant Education Sub-Committee (RPES)
A ‘Hold the Presses’ directive has been issued by the Panel on Research Ethics (PRE) to RPES.  PRE is the group that RPES is a ‘sub-committee’ to.  The PRE are the federal government authorized folks who provide guidelines for the human research industry in Canada.  Those guidelines are encompassed in their Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, second edition (2014) – TCPS 2, for short.  Note that these are guidelines, only – not regulations.
Your only real protection when signing on to any type of human research experiment or study is your own due diligence.  It is up to you to verify every aspect of the commitment that you are making to the researchers.  Your difficulty lies in determining the veracity of the commitment that the researchers make to you.  Remember, the language used by researchers may appear to be ‘plain English’ but, often it is not.  E.g. a ‘safety study’ is a ‘toxicity study’ - an experiment to determine the lethal dose; ‘life threatening’ means ‘risk of death’; etc.
In June of this year, PRE was presented with the collective efforts of a year of once a month cross-country conference calls between RPES members and Laura-Lee Balkwill of the Secretariat on Responsible Conduct of Research (SRCR). A new SRCR facilitator, Hanan Abdel-Akher, will be at the helm come December, 2015.  All members and our facilitator generated copious amounts of copy covering every angle of concern judged to be of importance to people joining as ‘guinea pigs’ in experiments on humans.  This past October, the SRCR informed RPRS members that the website utilizing RPES’s work – tentatively scheduled to be launched January, 2016, will be delayed for another year.  A couple of reasons were given – ‘need to choose a different platform’; ‘scale back scope of the project’; etc.
So a new round of once a month conference calls began October 27th.  The current focus is to develop a download-able brochure.  If this project does actually ‘come off’, RwR will certainly provide a link.
February 12, 2014: President of Research With Respect, Pat Maddocks, joins the 10 members of The Research Participant Education Sub-committee (RPES) whose task is to support efforts of the Secretariat on Responsible Conduct of Research and the Panel on Research Ethics.
May 29, 2013: A VERY small step for Canadian citizens who are test subjects in medical experiments - http://www.hc-sc.gc.ca/ahc-asc/media/nr-cp/_2013/2013-70-eng.php
Health Canada needs to know that Canadian test subjects deserve at least the same quality of information about our government sanctioned clinical trials as other civilized countries provide to their citizens.  Please download, sign and mail – no postage required – our letter to the new Minister of Health petitioning the federal government to establish a comprehensive Canadian Public Registry of Clinical Trials.
 

May 22, 2013: The Vancouver Sun's Pamela Fayerman blogs: How to find out about medical (clinical) trials; Canada finally crawls into this century.

May 13, 2013: Julia Belluz, senior editor at the Medical Post, writes in Science-Ish: Canada’s soon-to-launch clinical trials database: how does it measure up? that Health Canada's clinical trials database will not include some key information.

April 26, 2013: Health Canada has published Notice 107239-925, which begins:
"This Notice serves to inform clinical trial sponsors that Health Canada will publish information about all clinical trial applications (CTAs) authorized as of April 1, 2013, for the study of drugs in patients." For your convenience, we have copied the full PDF version of Health Canada's notice here.

February 18, 2013: Anna Maria Tremonti interview on CBC The Current: 'Bad Pharma': Why Ben Goldacre says drug companies mislead doctors and harm patients." During the radio interview, Mr. Goldacre also mentions the British campaign All Trials Registered | All Results Reported.

December 23, 2012: Health Canada Plans "web-based list" of authorized Canadian clinical trials

October 19, 2012: Critics' Response to Health Canada's 18 October Announcement: "Lacks Teeth". - Elie Dolgin, Nature Medicine News Editor

October 18, 2012: Health Canada has made an announcement regarding establishing a web-based Clinical Trials Registry for Canada! Help us keep up the momentum!    Download and send your letter to the Minister of Health for Canada (no postage required). You might include a copy of Judy Sgro's letter with yours for added impact.

September 6, 2012: Recent Globe & Mail Article: Health Canada should publicly release results of clinical trials and allow greater access to safety and efficacy information about drugs and other health products, according to a new analysis in the Canadian Medical Association Journal.

Tell Health Canada You Want a Public Clinical Trials Registry

January 1, 2012: We're Making Headway! The Honourable Judy A. Sgro has tabled two motions in the House of Commons after reading Lethal Dose.

Pass Lethal Dose On To Others

Give your copy of Lethal Dose to a friend, or simply leave the book in a public place - a coffee shop, airport, public transit, waiting room.

 

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How do clinical drug trials affect your health? Why does Canada need a Public Clinical Trials Registry?

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Why Canada needs a Public Clinical Trials Registry

Without Phase 1 Clinical Trials and their generous and courageous terminally-ill volunteers, researchers would be unable to develop new and better drugs to fight disease.  A Public Clinical Trials Registry for Canada will ensure that information on all clinical trials, whether the drug is found to be effective or not, is published so that future researchers are able to build on the knowledge already gained from past trials.

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The Research with Respect Care Program provides Phase 1 Clinical Trial Volunteers with free daily visits by a Bayshore Home Health nurse who will assist you with: 

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  • Liaison with cancer research centres

For more information or to register for services, call Toll Free: 1-866-265-1920

Research with Respect is committed to actively expressing our deep appreciation of the generous donation that Phase 1 Clinical Trial Volunteers make to the fight against cancer. We strive to supply you with useful information, effective self-monitoring tools and compassionate action.

Information for Medical Professionals Caring for the Terminally-Ill Phase 1 Drug Trial Volunteer

This section presents information to Primary Care Physicians, Nurses and Researchers on caring for the needs of a terminally-ill patient as a Phase 1 Drug Trial Volunteer.

Mar 6, 2017
March 4, 2017 – RPES STILL muddling along.  No date set for launch of website resource for Participants enrolling in research projects.  Concerns raised in The Toronto Star continue to be...
Nov 19, 2015
Nov. 3, 2015A ‘Hold the Presses’ directive has been issued by the Panel on Research Ethics (PRE) to RPES.  PRE is the group that RPES is a ‘sub-committee’ to.  The PRE are the federal government...
Feb 12, 2014
President of Research with Respect, Pat Maddocks, joins the 10 members of The Research Participant Education Sub-committee (RPES) whose task is to support...
May 29, 2013
http://www.hc-sc.gc.ca/ahc-asc/media/nr-cp/_2013/2013-70-eng.php Health Canada needs to know that Canadian test subjects deserve at least the same quality of information about our government...
May 23, 2013
May 13, 2013: Julia Belluz, senior editor at the Medical Post, writes in Science-Ish: Canada’s soon-to-launch clinical trials database: how does it measure up? that Health Canada's clinical...