Discovering patients who got a PD diagnosis in PPMI and Fox Insight cohorts

Analyzing and Reusing Data
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1

Hello! I wanted to identify which patients entered PPMI and Fox Insight cohorts without a PD diagnosis but got this diagnosis in any follow-up visit. Does anyone knows which variables or procedures I should look for to identify that in each of those datasets?

Thank you a lot!

2

For FoxInsight:

InitPDDiag is the diagnosis at time of registration in Fox Insight looking at youngest age

Then, you can use CurrPDDiag to look at if there was a change in diagnosis

Also, you can look at PDChangePD variable for people who had a change in their diagnosis

3

Agree with Gian. We typically recommend people to look at the InitPDDiag vs. CurrPdDiag to see if participants “phenoconverted” in Fox Insight. I have that in quotes because there are also some people who, based on their responses, were cured (e.g., went from reporting a diagnosis of PD, to not having PD). This could of course be due to reclassification of disease (e.g., correcting a prior misdiagnosis), but would recommend looking at multiple CurrPDDiag values and making your own assessment.

The number of participants who go from PD → not or no PD → PD is very small (my recollection is ~150 participants).

4

Thank you both for your excellent answer!

5

adding my two cents, as we just finished a manuscript using fox insight data and encountered this issue. We compared the reported PD diagnosis at time of a new survey deployed to currpddiag and excluded discrepancies. It wasn’t many exclusions.

6

Hello Everyone,

I am wondering if anyone has worked with both the Fox Insight and PPMI databases and determined whether any individuals participated in both studies? How was this determined? i.e. does the Fox Insight ID carry over into both?

Thank you so much and all the very best,

Minna Schmidt

Postdoc

Andersen Lab, The Buck Institute

7

ooo i feel like @jgottesman will know better but i feel like mjff doesnt match the people in those two datasets

8

Thank you @ecebayram ! Would love to hear if this matching is a possibility! @jgottesman !

9

Hi @MYSchmidt ,

This is something we’ve been interested in for many, many years, but unfortunately @ecebayram is correct. Since the respective study IDs are not GUIDs we cannot definitively link participants across PPMI and Fox Insight.

Our suspicion is that there are participants in both studies, but I realize that is not helpful from an analytical perspective. If you’re interested in understanding research participation, there is a value 'Research’ which speaks to this.

Hope this helps, let me know if you have any other questions and welcome! :slight_smile: