Hi, I'm trying to assess how many participants actually have, or consider themselves to have, Parkinson's. Is it right to assume taking the UPDRS survey was NOT limited to people who consider themselves to have parkinsons? There are several hundred entries in the scores table with all motor function questions with a response of 0 , no diagnosis of PD and no onset year....

Created by Malcolm Telfer telferm
Dear @BrianMBot , Thank you for the detailed reponse!
Hi @Erika and @Amir - apologies for not responding sooner. All of the responses were participant-reported and thus should be treated as such. As mentioned in the data documentation, "We provide responses in the release just as participants entered them for any integer input, even if they do not make sense. These 'outliers' underscore both the potential biases in participant reported outcomes as well as the importance of good study design and data collection methods." All that to say, we made the decision to leave any data curation of 'outliers' to the data scientist consuming the data instead of imposing our ideas / beliefs on everyone. Re: Parkinson's status, the column 'professional-diagnosis' in the Demographics survey is definitely the more reliable way to find participant-reported PD status. You may need to merge (by healthCode) across tables in order for that status to propagate to other tables.
Hi @BrianMBot, I am also interested in the answers for the question @Amir asked: "Does the information in the column 'professional-diagnosis' in the Demographic survey table reflect the Parkinsons status?". What is the most reliable way to find Parkinson's status based on the demographic data file ${reference?inlineWidget=true&text= 10%2E7303/syn5511429%2E1}? Or should I use another file for this? First I found the "dianosis-year" not the "professional-diagnosis" column, where some values are just invalid (e.g. someone with age 18 has 1900 as diagnosis year. I assume 1900 was some kind of default value. But still there is someone with a diagnose from 1918 with age 56 which is impossible) . Is it better to ignore this column? It would be nice to use, but if it is unreliable, we would definitely ignore it, not to draw incorrect conclusion based on this column I also have a question about how to infer the severity using only the part of the MDS-UPDRS and PDQ-8 ? There was another thread about this, without answer.
Hi Brian, Does the information in the column 'professional-diagnosis' in the Demographic survey table reflect the Parkinsons status? I am asking this because I have found several conflicting information. For example, some have checked the 'TRUE' option for surgery while they have checked 'FALSE' option for professional diagnosis, which doesn't make sense to me. (Or maybe I am wrong with that conclusion since I have an engineering background, not the medical one.) BTW, if I want to make a binary decision for each participant's health status (Parkinson/healthy) only by taking a look at the "voice activity" and "Demographic Survey" tables, which column/columns provide more reliable information? Can I rely only on the "medTimepoint" column in the voice activity table for such decision making?
Thanks for confirmation!
Correct. The initial release of the app allowed anyone to take the UPDRS survey regardless of self-reported diagnosis. The Demographics Survey (syn5511429) contains the self-reported diagnosis information for anyone who completed that survey (column 'professional-diagnosis'). Hope this helps!

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