While particpating in the study, treatment was to be provided, but the patient's appointments had all been data collection with no treatment.

Since withdrawing, the patient's appointments have been rescheduled three times -- so that now the July appointment has been bumped all the way to March.

The ICF claimed that treatment would be the same regardless of whether they gave consent to be in the study or not.

It looks to me as if this clinic was only collecting research data and not providing treatment, and once participation in the study was withdrawn, so were the appointments.

My question is who is the provincial ethics watchdog for medical research studies where patients are the test subjects, and how to contact that office?

Or other suggestions for addressing the ethics of a patient research project.

Hi Susan,
A patient accepted in a research project, would have had to sign an Informed Consent Form (ICF). This would have defined the steps that would be taken during the clinical trial. It should also have stipulations on what steps to follow if the patient chooses to discontinue with the clinical trial. There should be mention of steps that follow once a patient exits a trial.

You mentioned that the patient was being tested and examined. This is usually called "monitoring" and is normal in many trials. Again, the ICF should have a mention of this.

Regarding complaints, the ICF will list a contact person that the patient can ask questions to address concerns. Another thing to look for will be if the trial is a multi-site study - sometimes crossing over to other jurisdictions (provinces and territories). What is the head, or organizing, facility that is co-ordinating the clinical trial? You mentioned a "clinic" - do they have an "ethics board"? They must - even if it's not part of the clinic - they have to report to someone. It may be another clinic, hospital or university affiliated with the original clinic.

Also, if you choose to complain, keep all communication records: emails, notes from phone calls, etc. A paper trail will be useful.