We are trying to identify factors associated with improved quality of life and fewer PD symptoms. We are attempting to identify practices, beliefs, and therapies used by individuals who report excellent quality of life, few PD symptoms, and reduced rates of progression. After agreeing to participate, we will ask participants to fill our questionnaires about their experience with PD, their health in general, along with their food intake every six months for five years.
Parkinson's disease (PD)
Parkinsonism
Parkinson-plus syndromes (e.g. Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP), Corticobasal degeneration (CBGD), Dementia with Lewy bodies)
Must have online access, an email address, basic computer literacy
Inability to read/write English
Inability or unwillingness to complete surveys every six (6) months (~90 min)
Any individual with PD is invited to participate.
Cohort
Prospective
Not listed
CAM Care for PD survey
This survey has been developed to identify the complementary and alternative therapies most commonly used by individuals with PD. Results will be reported with descriptive statistics.
PROMIS: Global Health
This outcome measure will be used to assess general health and well-being in the cohort.
Patient-Reported Outcomes in PD (PRO-PD)
This outcome measure is a series of 33 slider bars, developed for this study, to evaluate the individual's perception of symptom severity. The cumulative score for all 33 listed symptoms will be reported as the PRO-PD score.
Qualitative
Participants will be given 'free space' to provide additional information they consider relevant.
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