Thanks, Linda. You are a wealth of information. I still cannot seem to get real excited about that alert. I think they nicked my brain during this last surgery lol

Laura -
There is an IRB required at each facility doing research (Institutal Review Board), a requirement of the Federal Drug Administration (FDA.) Defined on the ClinicalTrials.gov site:

INSTITUTIONAL REVIEW BOARD (IRB): 1. A committee of physicians, statisticians, researchers, community advocates, and others that ensures that a clinical trial is ethical and that the rights of study participants are protected. All clinical trials in the U.S. must be approved by an IRB before they begin. 2. Every institution that conducts or supports biomedical or behavioral research involving human participants must, by federal regulation, have an IRB that initially approves and periodically reviews the research in order to protect the rights of human participants.

The people chosen to be on the board must meet certain criteria, but you know how politics plays into local communities. This would be good to know (how they are selected). I do know that patients on the board are rare. I find that strange, but it's that way with most efforts FOR patients; they aren't represented. For some of us "seasoned" trial participants, we could help write clinical trial protocol, and possibly prevent many of these missed endpoints for promising research that is sitting halfway done on some institute's shelf in the back room. (sigh)

I'll look for a good website that gives more detail, but for starters here are a few very good ones:

PDTrials - www.pdtrials,org

Parkinson's Pipeline Project - www.pdpipeline.org

The National Institutes of Neurological Diseases & Stroke (NINDS), sponsors a site called ClinicalTrials.gov This link has good information:
http://clinicaltrials.gov/ct2/info/understand

And here are the major types of trials done (from the ClinicalTrials.gov site). I bold typed the two that I feel we need to work on the most:


What are the different types of clinical trials?

Treatment trials test experimental treatments, new combinations of drugs, or new approaches to surgery or radiation therapy.

Prevention trials look for better ways to prevent disease in people who have never had the disease or to prevent a disease from returning. These approaches may include medicines, vaccines, vitamins, minerals, or lifestyle changes.

Diagnostic trials are conducted to find better tests or procedures for diagnosing a particular disease or condition.Screening trials test the best way to detect certain diseases or health conditions.

[B]Quality of Life trials (or Supportive Care trials) explore ways to improve comfort and the quality of life for individuals with a chronic illness.