Parkinson's Disease Tulip


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Old 08-01-2011, 01:45 PM #11
Debi Brooks Debi Brooks is offline
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Join Date: Feb 2009
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Debi Brooks Debi Brooks is offline
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Join Date: Feb 2009
Posts: 312
15 yr Member
Default FTF should provide opportunity to go further

Quote:
Originally Posted by digger View Post
Debi,

I have been told that because of my experimental gene therapy surgery in 2007 that I would no longer be eligible for clinical trials.

Yet, when I entered by data, the Finder found 35 trials that I may qualify for.

Does the database not take prior brain surgery into account? Or have I been told incorrectly in the past that I will no longer qualify for any trials?

Carolyn
Hi Carolyn –

Prior brain surgery does fall into the “exclusion criteria” category for many PD clinical trials, but not necessarily for every trial. Moreover, this may also depend on the type of brain surgery in question.

The FTF tool does take into account whether someone has indicated prior DBS or “other neurosurgery”, but some trial teams may have chosen not to categorically disqualify people who indicate “other neurosurgery”, as I’m guessing you may have, before they understand more details. These trial teams may prefer to have a conversation with "you" (any potential subject) first to understand exactly what surgery you underwent and determine whether you are a possible match for their trial.

My suggestion would be to be in touch with any trials you’re interested in, share more about your past surgery, and inquire whether indeed you can still participate.

Hope this helps, Debi
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Old 08-01-2011, 01:50 PM #12
Debi Brooks Debi Brooks is offline
Member
 
Join Date: Feb 2009
Posts: 312
15 yr Member
Debi Brooks Debi Brooks is offline
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Join Date: Feb 2009
Posts: 312
15 yr Member
Default feedback welcome and needed!

Quote:
Originally Posted by Perryc View Post
Debi

I wonder if you would be open to an honest assessment of the technical capabilities of FTF, compared with existing search capability and compared to a patient activists' perspective on the reasons for slow enrollments in clinical trials. As you know I have been working for 10 years on the issues of ways to speed up the pipeline for PD, which includes the recruitment of PWP to studies and retaining their participation throughout studies now lasting as long as 18 months to wash out strong placebo responses to surgically delivered new treatments. Along with other leaders of the Pipeline Project, I have been preparing such an assessment for pdtrials.org, the community wide effort to do many of the same things as FTF and would like to share it with you as well as the Neurotalk community.

Perry Cohen
Director, Parkinson Pipeline Project
Dear Perry,

Thanks for your offer of input. I believe you have been in conversations with my colleague Laura about this tool as it was in development. Now that it is up and running in Beta, it would be very useful to have your feedback on its technical capabilities. I will ask her to reach out to you directly. I would underscore your other, very valid point…this tool alone will not overcome the varied and significant challenges in clinical trial recruitment. A broader effort is needed to make a meaningful dent in this and MJFF is thinking through additional program actions that it can take to contribute to possible solutions. More to come.

Debi
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