[Debi Brooks]

Hi all,

MJFF will be hosting our first Hot Topics Call of 2012 tomorrow from 12pm – 1pm Eastern Time. The call will feature MJFF’s Vice President of Research Programs, Mark Frasier, PhD, as well as MJFF Scientific Advisory Board member David Weiner, MD, discussing “How We Get to Cures and Clinical Trials 101.” Email hottopics@michaeljfox.org to RSVP and for dial-in information.

Best, Debi

[olsen]

Wish there had been an earlier notice of this, I would have very much liked to access the conference/update. because I have little time now to read all the posts, I missed it. Hope someone will post what info was disseminated. thanks, madel;yn

[paula_w]

It was for people unfamiliar with treatments or clinical trials. It led to Linda and I wondering when people like us - already informed - will ever be able to contribute.

[jeanb]

I appreciated the summary and overview of the process. And while I agree that it was basic pretty much -- we did have the opportunity for more indepth information when the session was opened up for questions.

Unfortunately, though, the questions were taken "live." And except for LIndaH, none of the people stayed on topic.

I would suggest that in future to take questions from email, or by phone offline, so that questions are reviewed and only questions pertinent to the subject are mentioned and answered during the meeting (as PDF does in its webinars).

I was never able to ask my question, about specific barriers to PWP participating in clinical trials, and how these issues can be addressed at the beginning of the process -- in trial design.

Jean

[Debi Brooks]

Thanks for your feedback on our Hot Topics Call Series. As the call series expands and participant list continues to grow, we are looking at technology options to improve the Q&A session – working to balance the ability for participants to ask questions with our goal of being sure questions are pertinent. We’ll be circulating a survey to all of yesterday’s participants and are looking forward to feedback on how we can improve the calls in the future!

I’ve included the dates and topics for the remainder of the series below – if you would like to register for any/all of these, please email hottopics@michaeljfox.org and specify your topic/calls of interest. All calls will be from 12pm – 1pm Eastern Time.

More information about the series, as well as recordings of past calls, can be found on our blog at www.michaeljfox.org/hottopics.

Wednesday, May 9: Disease Modifying Therapies and Biomarkers
Thursday, June 14: Living with PD: Going Beyond Medications
Tuesday, September 18: Genetics and PD
Wednesday, October 17: Cognitive Issues in PD
Thursday, December 13: Review of 2012 and Thinking Ahead to 2013

Best, Debi

[girija]

I thought the presentation was good and just right for clinical trials 101.
I would have liked to hear more on gene and cell therapy clinical trials too. I think thats where we get into many hurdles with sham surgery, placebo effects and associated scientific as well as ethical issues which make patient recruitment harder.

Though I didnot get to ask my questions, I liked the format of patients/caregivers directly asking questions.
Thanks.

Girija

[Debi Brooks]

Hi everyone – I wanted to share a quick reminder that our next Hot Topics call is coming up tomorrow (Wednesday May 9) at 12pm ET. The topic is disease-modifying therapies and the importance of biomarkers, and the call will be led by MJFF CEO Todd Sherer, PhD, and Dr. Ken Marek, the principal investigator of MJFF’s biomarker study the Parkinson’s Progression Markers Initiative. If you are interested in dialing in you can RSVP and see the dial-in details by clicking here. Like last time, a recording of the call will also be posted later on our website.

Best, Debi

[pegleg]

Hi all,
I had an Appointment and misread the announcement of this call, thinking it started at 1:00. From time to time I am reminded by such "absent"-mindedness that this is why I cannot hold down a job.

One of the other orgs conducts a similar series of hot topics, only in the form of a webinar. However, it isn't actually a webinar, but is accessible via the telephone and the computer. Those who access the call via their computers have the advantage of seeing a set of slides prepared ahead of time. This is adding a multi-sensory approach, which not only improves remembering what is presented, but keeps the focus group "focused.".

Using this mode of a semi-webinar presentation, the listeners/attendees are still allowed to ask live questions, only they are typed online and submitted. Then the submitted Q&A are screened on the other end by a staffer of the org. This method is always followed up with the statement that " . . . questions not read during the session will be answered via email.". This is probably an improved method for handling Q@A, which prevents 1or 2 people from monopolizing the question period, but there is the added time to answer all questions submitted, which doesn't always happen.

I am, however, glad to see these efforts being made to include the person with Parkinson's at such important grassroot levels leading to actual patient-centric involvement.
Peggy

[paula_w]

on both calls so far the questions have been few and dominated by multiple questions from a few people that are off topic. Submittting them during the conference and choosing focused questions that will at the same time teach something would be more succesful. When you only have an hour, there is no time for anyone to be too wordy.My questions were:

What is the spinal tap for? i was hoping it would yield info about other transmitters.

can neurotrophic factors cause cancer cells to grow if one has cancer?

[Debi Brooks]

You can find links to the recorded call here. http://blog.michaeljfox.org/2012/05/...ers/#more-4108

Thanks too for the feedback on format. We are exploring cost effective options.

Best, Debi