I am Francesca Di Cara , and an immunologist at Dalhousie University , Canada.
In our suty of gut-brain axis we have characterized a peptide linked to neuroinflammation and PD onset in murine systems.
To define the relevance to disease in humans we were redrected to the PPMI datasets and we analyszed the OLINK data.
We found data that support our results and encourage us to continue the study. Can I use the data I extrapolated from the PPMI study in a publication as long as I declare it ?
And ultimately, if I wanted to follow up to gather information on what happened to some podromal patients, who should I contact?
Thanks for the question, @dicara! Here is the current PPMI Publication Policy which contains PPMI publication requirements and contact information for the appropriate PPMI committee (requirements differ for PPMI-authored vs external publications).
@lkirsch, would you have any additional insight on this?
Amazing work! You are free to publish your results, but you may not print/publish any individual-level data either in the manuscript, in supplemental files/materials, or scientific databases - individual-level data must be returned to PPMI and may only be distributed via LONI. You are welcome to print aggregate/summary information in a manuscript, just not individual-level data. PPMI does have a special section of the database for publication-associated results, if you need to take advantage of it. Just email resources@michaeljfox.org with a description of the data you want to return to PPMI to get started.
As for information on what happened to some participants - everything PPMI has is available to you, so if you don’t see it, it does not exist. PPMI does have a process for investigators to request access to biospecimens to conduct analysis - you are also welcome to propose new work if you see gaps, and see if your project gets approved. I can tell you that there are additional Olink analyses currently in process from requesting investigators, so you may see new proteomics data in the future relevant to your research interest.
I will read the policies and look forward the data to come.
i do see a gap relative to the data I found interesting and related to my animal studies. Who should I email to see if there is somenthing already in preparation or if we could help to fill the gap?
If I see that what I feel is missing it is really not in the list, can i contact you to talk about it and how one could help and contribute to the PPMI?
I’m afraid that’s not my domain, but you can find the instructions on process and considerations around requesting biospecimens at PPMI’s website here: https://www.ppmi-info.org/access-data-specimens/request-specimens. If you share what you’re looking for in the Community of Practice, you may find that another user can tell you if they are aware of associated research or data!