MJFF is developing an online study to launch in 2014 that will collect information directly from Parkinson’s patients about their experiences living with PD to share with researchers working on the front lines of drug development. One of the fun / important tasks is naming it! We would like your feedback on some of the possible names and taglines we have identified through this short survey. https://www.surveymonkey.com/s/GFLXTLH

Your responses will help us create the most effective online tool possible to get us closer to our goal of curing Parkinson’s disease. Thank you!

Thanks in advance and Happy Holidays

Debi

PS ... we just are finishing up the last of our grant contracts for the year. Ends up we funded over $70M in new research in 2013. So exciting!

Another way to learn about experiences living with PD is to read the peripatetic pursuit of parkinson disease. I bet you're already working on that Debi!

Everyone i know who has read Peripatetic Pursuit has great things to say! Not only about the content but the vibrancy of the layout.

Our study will collect and organize data (everything from family and medication histories to periodic tracking of on/off times, mood, ... all sorts of patient centered data. So, a bit less of narrative storytelling but data around daily living as tracked and reported by patients.

Thanks to all for contributing to the survey/naming!

Debi

Debi,

You write "data, data, and more data". That's music to my ears.

When are you going to open shop?

Are you going to include online symptom testing from the start? (I'm thinking of tap and tremor tests, for instance.)

Are you going to have open access to the data?

Are you going to have the facility to tag data?

This sounds arcane, but it is really important.

First of all let me explain what I mean by "tag". It's a flexible way to store and share data over and above that planned for by the database creators. At its simplest, it comes from having comment fields in the database. For instance, suppose that the database doesn't include body weight, but a user thought it important to record this they could write in the comment field "my weight is 76kg". To make it easier for people to share information the freeform English could be replaced by a tag followed by any number of values, e.g. #WEIGHT:76. So, tags add flexibility.

Second, let's look at one of the possible uses of tags in this context. They make it possible to run small clinical trials. For instance, a group of people may get together to see the effect of a food X on their PD symptoms. To make it easy to collect together their data they could tag their entries #X:. I see the facility to run simple clinical trials as an advantage. I hope MJFF does too. But, how do you intend to address the ethical issues raised?

John

Great questions JohnT– our plans for the tool continue to evolve, but here’s where we stand right now.

We’re currently in the building/testing mode for phase one of this project, which is focused around getting Parkinson’s patients to sign up and provide some information about their PD experience, symptoms and health. We’re planning a soft launch just to an insider PD community in the summer followed by an larger, more broadly-promoted launch in the fall. At launch, we’re not planning to include testing like you mention, however we are investigating adding something similar to this in the next phase of the project. This may include a tap test and/or incorporating data from wearable devices, such as fitness trackers or smart watches.

Yes, we will provide open access to anonymized data to Parkinson’s researchers. We believe that, once a significant number of people with Parkinson’s participate, it will be a powerful tool for hypothesis generation as well as improved trial cohort identification/recruitment. We’re not planning on running our own clinical trials with this data per se (although collecting the raw data is in itself a "trial" so we are seeking IRB (institution review board) approval for the tool/website). Basically, we intend these data to be available to the research community writ large to help guide the course of research and clinical trials performed by others.

For PD patients, we are planning to include a way to query aggregate data from the community. This will give patients the ability to see how they compare against others.

As for the type of tagging that you describe, we’re not currently planning something like this. Most of the data we’ll be collecting will be normalized via forms and questionnaires with specific drop-down choices. If we add more unstructured data, such as a discussion area or the ability for patients to more freely record their experiences via a narrative diary, for example, then tagging like you describe would be an excellent additional feature.

Again, our plans over this past year have evolve as we've been in the weeds on building the tool, and we will continue to develop this post launch. We do plan to further add phases or modules beyond what we start with in 2013, both based on the planned roll-out as well as feedback from the Parkinson’s patient, caregiver and researcher community.

Hope this helps.

Happy New Year, Debi

PS ... a few dozen people helped provide naming input via the survey --- thanks to those who participated!

Debi,

Thanks for your detailed reply.

I'm sure FoxData will be a great success.

John

Thanks to those of you who took our naming survey. We came out with a bit of a toss up so we're back with an updated survey. Anyone is welcome to participate (whether you contributed before or not!) All input is appreciated.

https://www.surveymonkey.com/s/LG2KXF7

Best, Debi

Thanks for posting about this survey in the NT forums. You are so right to seek patient input in naming the new program. Please keep us updated here, as well as through the personal emails of those who participated in the surveys.

I am also hopeful that patient input was allowed in developing the new project. It not only empowers and implies ownership for PWP, but in my opinion, such input produces a more patient-friendly product.

Thanks again for this opportunity.
Peggy

Thanks Peggy, I fully agree.

Gary