PD-RISK Index: Piloting an unsupervised toolkit to identify adults with Parkinson disease

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Effective screening for Parkinson disease (PD) is important for symptom management and patient recruitment into disease-modifying trials. Here, we examined the performance of the PD-RISK Index toolkit in identifying PD patients at home without supervision. Between 2022-2024, we recruited 305 participants (ages, 40–85 years): 93 with typical PD; 66 had other neurological conditions; and 146 were healthy controls. Two versions of the toolkit were completed: An original, 69-item-long questionnaire with the 40-scent University-of-Pennsylvania-Smell-Identification-Test (UPSIT); thereafter, a simplified, 11-item-short questionnaire with a newly-developed 8-scent smell test and responses submitted online. The corresponding summary scores (‘PD-RISK Indices’) were calculated for each subject to evaluate diagnostic performances. In both versions, PD patients had higher questionnaire scores and worse olfaction than healthy controls ( PThe plain language title The PD-RISK Index study: Facilitating an earlier diagnosis of adults with Parkinson disease by screening at home with a short questionnaire and a simplified smell test Plain language summaries Effective screening for Parkinson disease (PD) is important for symptom management by healthcare workers and the recruitment of patients into disease modifying trials. We previously published a two-step model for this purpose, which has been validated using several established study cohorts. The study below represents a field-test of this model and the toolkit to implement it (i.e. a self-report questionnaire and a smell test) using a real-world setting. Between 2022-2024, 305 participants (ages, 40-85 years) were recruited into the study: 93 with typical PD; 66 had other neurological conditions; 146 were healthy. Two versions of the toolkit were completed at-home without supervision by a healthcare worker: (1) an original , 69-item-long questionnaire and a 40-scent smell test; (2) a simplified , 11-item-short questionnaire with a newly created, 8-scent smell test. Accordingly, two versions of summary scores (‘PD-RISK Index’) were calculated for each subject to examine group classification. Several performance metrics were used to evaluate diagnostic performances and to suggest clinically relevant thresholds. In both versions, PD patients had significantly higher questionnaire scores (meaning higher risk of having PD) and lower smell test scores (meaning more impaired sense of smell) than healthy controls; scores for subjects with other neurological conditions ranked at intermediate levels. The simplified questionnaire outperformed the original version in diagnostic accuracy. The abbreviated smell test performed as well as the 40-item version in identifying hyposmia. The simplified ‘PD-RISK Index’ showed stable performance across sexes and disease duration. This study shows that non-invasive and unsupervised screening for manifest PD can be effectively carried out remotely using a simple 11-item questionnaire, an abbreviated 8-scent smell test and an online data entry system, thereby generating a PD-RISK Index for each individual.

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