Patients in Clinical Trials: How Would You Improve C. Trials?

I’m looking for YOUR feedback.

As many of you know, I’m very honored to serve as a patient advocate on the NCI Neuroendocrine Task Force, which sits under the NCI Gastrointestinal Steering Committee. For more information, please see this link:
http://www.caringforcarcinoid.org/news/announcements.asp#Feb_2,_2008

The Task Force and Steering Committees comprise a group of terrific physicians who are working to help patients. I’m grateful to be a part of this group. I participate in meetings once a month. My role is to enhance the development and implementation of clinical research that will improve the prevention, detection, and treatment of patients. Key areas of focus include:
• Providing patient, family and community input into the design and implementation of individual clinical trials and overall clinical trial strategy for GI cancers; and
• Disseminating appropriate information to the patient community.

Many of us carcinoid/NET patients have participated in a clinical trial at some point in our “cancer lives”. I’ve participated in two—see the “About Nancy” section of the website for details.

I would VERY much appreciate feedback from you (or your family members or caregivers) regarding:
• your overall experience;
• your concerns during the trial;
• what you would change about the trial.

Some questions to consider:
• Did you experience undesired and/or unexpected side effects?
• Did you feel that you understood the goal of the clinical trial?
• Did those running the clinical trial spend enough time with you, in your opinion?
• When you had questions, were you able to reach a nurse within a reasonable amount of time?

Please e-mail me at nancy.ohagan@caringforcarcinoid.org

In order for your information to be useful, please tell me:
• the drug of the clinical trial;
• the dates in which you participated in the clinical trial;
• whether you required any “preparation” for the clinical trial (e.g. preparatory surgery);
• the location of the trial.

I will read each response, but may not respond as we typically receive many responses. Please know that I’m very grateful for each person’s input and opinion. Together we will improve the clinical trial process for NET patients and alert the NET Task Force to important issues to consider.

Thank you!