Hi all,

I am excited to share with you all that this morning we officially launched Fox Trial Finder – MJFF's new online clinical trial matching tool designed to speed research by making faster connections between volunteers and recruiting PD clinical trials.

As you know well, clinical trials and studies play a critical role in the work to discover new Parkinson’s research, and yet persistent challenges in identifying participants for these trials and studies represent one of the most significant problems facing Parkinson’s drug development today. Up to 80% of trials fail to recruit enough volunteers within planned timelines.

With Fox Trial Finder, volunteers looking to participate in studies now have a mechanism to find trials relevant to them and their personal experience with Parkinson’s, and, reciprocally, clinical trial teams have a way to connect faster and more efficiently with motivated volunteers. As the Fox Trial Finder volunteer community grows, we believe it will become an increasingly important asset to the PD research community, assuring clinical trial coordinators and funders of PD research that when they initiate a trial they will have a ready first stop for recruiting participants.

Fox Trial Finder will be central to broader MJFF efforts to raise awareness about the importance of clinical research and to share this opportunity to participate in work for a cure in a very personal manner with communities across the country. Already we are seeing warm and enthusiastic receptions from those who have seen special previews of Fox Trial Finder, and excitement not only about signing up but also about helping to spread the word.

We are very excited for what the launch of this new initiative means both for helping PWPs and their friends and family get involved in research and for speeding progress to a cure. We look forward to sharing more with you in the weeks and months to come. If you have any questions, please let me know, and meanwhile go to www.foxtrialfinder.org to check out the tool and create your Fox Trial Finder profile!

Best, Debi

This is an important new tool to help us find answers. It can connect you directly to clinical trials in your area for which you might qualify, and it will keep your information on file to automatically notify you when new, compatible trials become available.

It will only work if you sign up - please do !!!

Can someone please help me understand how to list this tool in the "to the newly diagnosed" section of this site?

Many thanks, Debi

Hi Debi,

I may have missed something but I think you just go to the thread as you would any other and post in it. Let me know if that doesn't work.

I should add that its the first sticky.

given the content of the "newly diagnosed" thread, I opted for putting additional information on the "clinical trial" thread--hoping it will be useful there too.

Please let us know if there are other key places we can post information about Fox Trial Finder. We have a long way to go to get the nearly tens of thousands of people currently needed for trials better connected and engaged.

I'd like to see FTF register 5,000 people in the coming months. Your help is needed.

Debi

Now that Fox Trial Finder https://foxtrialfinder.michaeljfox.org/ has been up and running for just over a week, I wanted to share a look at the numbers thus far.

• 300 volunteer members have completed profiles.

• 5 trials have reached out to tell us that patients are contacting them.

• 5 new studies have been submitted directly to FTF by trial teams and are pending posting, and 3 more are about to be submitted by coordinators.

• 16 studies either already have their coordinator registered and recruiting on FTF or have been updated by the coordinator / are awaiting IRB review in order to publish an update.

Our goal is to register 1000's of potential volunteers to help meet the current need of at least 50,000 patients and controls. We have a long way to go to help better match willing participants with ready trials.

A special thank you to Jean and Sheryl for spreading the word on pdplan4life.com (42 people have come to FTF from their efforts thus far). And thank you to those of you who have helped by sharing the site with other groups (such as support groups and/or clinical trial coordinators where you are treated). Everyone's help is really appreciated.

Debi

Dear Debi,
Please let us know what the state of play is regarding Europe, and in particular the UK & Sweden. I know the trial finder is due to come, is there anything we can do to improve awareness of it, and to encourage fellow PD'ers to participate. Also are controls needed as well?

Lindy

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

We've had over 300 page loads of our web page about the Fox Trial Finder. This is during the period of July 19-30.

http://www.pdplan4life.com/fox-trial...cal-trials.htm

Jean

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