How To Get Promising Therapies To Those With HD Sooner

Here's a few of my thoughts, from on a person with HD's perspective on "How To Get Promising Therapies To Those With HD Sooner. How do you find out quicker if potential therapies really work for HD? Howdo you eliminate bad potential therapies as fast as possible so you can moveon to testing other potential therapies, thus only spending the majority ofthe time on the most promising therapies? Once a potential therapy is foundfor HD, how do you get it to everyone as quickly as possible?

Cycle time reduction is the smartest and most efficient way! As a leanmanufacturing expert while working at the AlliedSignal Automotive and Aerospace Divisions I utilized this technique daily to drive more money tothe bottom line, decrease inventories, quadruple production output, increasemanufacturing throughput and ultimately increase the company's Return OnInvestment (ROI)- all without spending lots of extra money! We called it working smarter, not harder! However, in our current clinical researcharena this is a very hard paradigm to break. If you're a researcher, whyrush on clinical trials, and it gives you and your staff plenty of breathingroom to begin advertizing, recruiting and ultimately examining participantsfor the research study you're conducting. However, if you happen to be theone dying of HD, extra time is something we don't have much of and maybeit's time to demand that the old "paradigms" and "normal" time standards forclinical trials be drastically reduced!

The very successful fMRI studyconducted 8 months ago by UCSD at San Diego was extremely successful inreducing cycle times. The entire study was fully enrolled (includingcontrol subjects) and all necessary testing completed in just 4 shortmonths!! It was a priviledge working with Jody Goldstein at USCD toaccomplish this herculean effort! She is truly committed to reducing cycletimes to get test results sooner! Imagine a world where you can fill clinical research studies within days orweeks instead of months and finish them sooner than the existing ones!Imagine having participants who are not afraid to participate in ANY newresearch study because they know their time commitment will be minimal, notfive years as with one of our current studies. I seriously doubt if thisstudy will ever be filled and I can also guarantee you that once somethingmore promising comes out, people are going to bail out of this particularstudy and into that new one to glean a little hope sooner. In order to effectively reduce cycle times in clinical research studies,more information has got to be know about the available participant pool soonly ones that "pre-qualify" can be contacted. We did that recently here inArizona. We already knew who was gene positive but still asymptomatic sospecific e-mails and phone calls could be made to only these individuals.Really knowing the sheep in your flock allowed me to compile the type ofinformation on them that also allowed Jody at UCSD to identify, match andselect closer "control" participants. Information was shared on everyonewho was attending from Arizona so appropriate "controls" could be selectedimmediately, eliminating the need to wait until the last minute.

This Functional MRI (fMRI)) clinical research study sponsored by CHDI.Because of its uniqueness, additional information had to be concatenated onpotential participants- those who were left handed could not be used astheir brains functioned differently than right-handers and would "cloud" theresults. In addition, sex and education were also critical so "controls"could be matched more precisely. Because I had been over the ArizonaAffiliate for the last seven years I knew everyone here very well and hadalready established a friendships with everyone which made the collection ofadditional information needed as simple of making a few phone calls. Whatare your limiting factors to reducing cycle time?