Questions about MJFF datasets/funding

Ideas and Inspiration
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Hi all, I am interested in discussing ways to expand datasets such as PPMI and/or Fox Insight to collect high quality data pertaining to DBS in PD. Furthermore, I would be interested in understanding if MJFF is considering any funding opportunities in the future pertaining to DBS/neuromodulation. Any recommendations regarding who I might connect with within MJFF to discuss these topics? Thanks in advance!

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This is an interesting question that I have also been considering, but not directly related to DBS. I hope you don’t mind using your post to also ask a similar question hehe. To my knowledge, the PPMI study involves approximately 50 centers, with only one located in an underrepresented region (Africa - Nigeria). Would it be of interest to PPMI to include research centers from other global and underrepresented regions such as Latin America, Asia, and Oceania?

If this isn’t to place to ask about this type of question, where could I obtain this information?

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@gdp22, my understanding is that, at present, there are no plans to expand DBS data collection in PPMI or Fox Insight, though I will note that both include surgical history questionnaires that indicate whether a participant has received DBS which could then be correlated to other data (i.e., imaging or biologics in PPMI, genetics/PRO in Fox Insight). MJFF also supports RAD-PD, which includes DBS data. Let me know if you are interested in exploring what would be available, happy to discuss.

For prospective data collection, the options are more limited, but a few thoughts come to mind:

  1. Therapeutic Pipeline Program makes both clinical and pre-clinical grants on a rolling basis and may be a fit depending on your specific research question.

  2. If you are interested in further PRO data on DBS or neuromodulation, there is the ability to propose new one-time surveys in Fox Insight – again, this is contingent upon a number of items, but if of potential interest, let me know, happy to discuss further.

Additional RFAs/RFPs are still being planned for 2024 so uncertain whether there will be additional funding programs that will be the right fit for DBS/neuromodulation projects.

@danieltds, to your question about expansion of PPMI clinical sites, while this is not my area of expertise, I know there is general interest in expanding the study’s reach to other geographic regions, but that it is complicated by regulatory (and financial) challenges. Not specific to PPMI, but MJFF does support clinical trials/data collection in LATAM through LARGE-PD and East Asia through IPDGC.

Hope this helps, happy to chat further about any/all of the items above!

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Thanks so much for this thorough response!

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Thanks for your response, Josh! Sorry for the late answer. I participate in the LARGE-PD initiative and I think it already serves as something inclusive and important. I antecipated that those regulatory and financial challenges would be reasonable reasons for not having more centers from outside Europe and US. Once again, thanks for your answer!

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