I attended the NY Clinical Trials Fair this past Saturday, hosted by MJFF. I thought I would pass along a few observations. First, I think the whole concept of MJFF having these Trial Fairs across the country is a fabulous concept and hopefully will help educate PWP on research being conducted in their nearby communities and, subsequently, increase patient participation rates. The fair was very well organized with about 40 researchers and doctors available to explain, one on one, their ongoing studies. Most of the major hospitals and MDS centers in the NYC metropolitan area were represented.
I spoke to the majority of researchers at the fair.

My second thought was that there were a proliferation of interesting Observational, Genetic and Imaging studies currently recruiting patients. I signed up for two long-term observational studies, a genetic study and an imaging study.

Unfortunately, I did not see anything new and exciting with regard to clinical studies, either for symptomatic treatments or interventional for progression control. I spoke with the research team for the transdermal nicotine patch study but don't think I'll participate.

I was surprised to see that Cornell is revisiting the CoQ10 research by beginning a new pilot study. They will be researching Ubiquinol this time. Does, anyone remember what form was used in the previous study which was stopped (Ubiquinol or Unbiqinone)? They are also beginning a new trial testing N-Acetyl Cysteine (NAC) for neuroprotection. I'm getting more qualifying information on this one.

Finally, most of the researchers had the same statements regarding recruitment of patients - It's very difficult! Many of these studies have been delayed for years because the trials don't have large enough sample sizes. Clearly, this is more the case with the clinical studies than the others. They claim that as many as 85% of all studies are either delayed or halted because of lack of patient participation. I personally don't know how to solve this problem, although I have many thoughts on it. I do know that if we are going to cut down the extensive time it currently takes to take a drug from conceptual idea to available on the shelf, we as a community, have to do something about this. We owe it to ourselves, our kids and our grandkids to participate in research so we can speed of the pace of finding better symptomatic drugs and hopefully, the holy grail, of neuroprotective and progressive slowing drugs.

I will be attending another MJFF event on Thursday, the PD Therapeutics Conference. This event is geared more toward researchers, scientists, and doctors. I'm hoping that I'll get some information on new research and studies that have not yet begun.

Gary