Post by Sharon on Sept 26, 2011 14:19:09 GMT
Survey: How patients with rare diseases view clinical trials?
This survey is legit and the results from this survey will be analyzed and shared at a major conference on rare diseases. This conference will be held in Washington D.C. on October, 2011.
FYI, I just filled it out and it was very simple and doesn't ask your name. It does ask your opinion on things like when you were diagnosed and how you were handled, the government spending money for rare disease and our condition and Clinical Trials.
An example of one of my answers was that with our condition you can't just count the number of people diagnosed or that the physical part is not seen with the eye. Our condition effects everyone around us, family, friends, work and just anyone you encounter.
Hope everyone with TMAU or any Rare Disease takes it! A great way to voice your opinion and maybe help get some Clinical Trials done.
www.rarediseasesurvey.org/
This survey is legit and the results from this survey will be analyzed and shared at a major conference on rare diseases. This conference will be held in Washington D.C. on October, 2011.
FYI, I just filled it out and it was very simple and doesn't ask your name. It does ask your opinion on things like when you were diagnosed and how you were handled, the government spending money for rare disease and our condition and Clinical Trials.
An example of one of my answers was that with our condition you can't just count the number of people diagnosed or that the physical part is not seen with the eye. Our condition effects everyone around us, family, friends, work and just anyone you encounter.
Hope everyone with TMAU or any Rare Disease takes it! A great way to voice your opinion and maybe help get some Clinical Trials done.
www.rarediseasesurvey.org/