I got the email below from Eileen Scott. I am posting it here so that people who participated in clinical trials in the past can reply back to Gina and Eileen.
Thanks....
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From: eileen.s@cooleysanemia.org
To: eileen.s@cooleysanemia.org
Subject: Letter from Gina Cioffi
Date: Wed, 13 May 2009 16:24:07 -0400
Dear Patients -
I hope that you received my letter asking for your opinion on clinical trials as well as information on your own involvement in clinical trials, As you know I will be speaking at an NIH workshop next week and really would like to get as much feedback as possible to share with the NIH and investigators working to create clinical trials.
Can you take some time to respond to the following questions by email g.cioffi@cooleysanemia.org or call me at 800-522-7222 to review the questions with you over the phone.
Thank you so much!
Gina
1. Have you been approached to participate in a clinical trial over the last ten years?
2. Please name the trial(s) you were asked to participate in.
3. Who approached you?
4. Were you eligible for the trial?
5. Did you feel that you were adequately informed about the value of the clinical trial?
6. Were there trials you were approached about but did not meet the eligibility?
7. Would you have participated in the trial if you met the criteria?
8. Do you think that the trials of which you are aware are designed to accommodate your personal needs?
9. Have you ever been approached by an investigator regarding your opinions on the design of a clinical trial?
10. Do you think that the trials offered to the thalassemia community are vital?
11. Do you think that the trials offered to the thalassemia community will ultimately lead to better quality of life?
12. What is your belief about the safety of clinical trails: Are they
a- very safe b - somewhat safe c- not safe at all d - not sure
13. True or False - Clinical trials often have enough patients enrolled.
14. How can trials and the importance of trials be better communicated to the thalassemia community?
15. Try to visualize and describe a trial that you would go out of your way to participate in - what would its goal be, how would it be designed, etc.?
16. Do you know if you are registered within the TCRN (part of the Thalassemia Longitudinal Cohort study?)
17. If you have participated in a trial in the past can you take a few moments to offer a critique of it.
If you are responding by email, please reply to both Gina and I. Thank you.
Eileen
Eileen Scott
Patient Services Manager
Cooley's Anemia Foundation, Inc.
330 Seventh Avenue
Suite 900
New York, NY 10001
212-279-8090 ext. 205
fax: 212-279-5999