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!
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
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).
Thank you both for your excellent answer!
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.