Does anyone know of any visualizations for when certain Fox Insight surveys began and ended data collection in a historical sense? This would be different from the Participant Schedule of Activities document.
For instance, the Environmental Exposure (sm) survey began on October 2017 and closed in November 2019. It would be useful to see these various surveys on a timeline (with perhaps participant enrollment / participation) to gauge the potential “coverage” of a survey.
I was just curious if this figure/representation already existed. Thanks in advance!
@mattk this sounds great and does not exist as a visual. That said, I’m currently in the process of responding to reviewer comments for a revised Fox Insight data descriptor paper that I’m lead author on and we generated some tables with this information. Perhaps you could use these to generate the visual(s)?
Table 1: One-Time Questionnaires Deployed in Fox Insight as at 03-01-2023 to the PD Cohort only
Survey Topic
Deployment Period
Responses
Participating Cohort
Assessing Discrimination in Healthcare*
June 2021 - January 2023
5,367
All participants with PD
Cannabis use in PD*
January 2020 - January 2023
5,618
All participants with PD
Compensation Strategies to Improve Walking in Persons with PD*
March 2020 - January 2023
8,131
All participants with PD
Impact and Communication About OFF Periods
February 2018 - March 2018
1,290
All participants with PD
Patient Therapeutic Preferences Questionnaire by the Medical Device Innovation Consortium
November 2017 - January 2018
4,667
All participants with PD
The Role of Stress in Parkinson’s Disease*
August 2019 - September 2019
5,036
All participants with PD
Understanding Fatigue in Parkinson’s Patients*
March 2019 - June 2019
1,647
All participants with PD
Table 2: One-Time Questionnaires Deployed in Fox Insight as at 03-01-2023 to All Participants
Survey Topic
Deployment Period
Responses
Participating Cohort
Attitudes and Beliefs Regarding Research and Genetic Testing for PD*
January 2022 - January 2023
6,512
All participants
COVID-19 Experience in the PD Community:
Part-1*
April 2020 - March 2021
9,146
All participants
Part-2*
June 2021 - January 2023
7,619
Environmental Exposure Questionnaires (PD-RFQ-U):
Alcohol
October 2017 - March 2019
2,830
All participants
Caffeine
6,495
Smoking and Tobacco
3,833
Head Injury and Concussion
3,106
Pesticides at Work
3,070
Pesticides in Non-Work Settings
2,805
Residential History
2,792
Physical Activity and Sleep
3,615
Height and Weight
3,746
Calcium Channel Blocker Medication History
2,926
Anti-Inflammatory Medication History
1,988
Occupation
October 2017 - January 2020
6,124
Toxicant
October 2017 - February 2019
3,066
Female Health History
October 2017 - December 2019
4,770
Experience with Sensory Misperceptions*
July 2020 - January 2023
8,447
All participants
Medication Deprescribing & Clinical Research Study Participation*
March 2022 - March 2023
6,901
All participants
Mood disorders and Parkinson’s disease*
July 2021 - January 2023
8,120
All participants
Repetitive Head Impact*
November 2020 - January 2023
7,659
All participants
Table 3: One-Time Questionnaires Deployed in Fox Insight as at 03-01-2023 to specific sub-cohorts
Survey Topic
Deployment Period
Responses
Participating Cohort
Care Partner Experiences*
November 2021 - January 2022 and May 2022 - present
2,751
All participants without PD (care partners)
The Financial and Social Impact of Parkinson’s disease Survey
September 2018 - July 2019
1,846
All US-based participants
The Role of Stress in Parkinson’s Disease (Control)*
October - December 2019
1,292
All participants without PD
Understanding Psychosis and Its Burden on Caregiver*
September - October 2019
740
All Participants without PD (caregivers)
Experiences of Women Living with PD: Female Health and Home Life*
May 2022 - present
3,464
Female participants with PD
Experiences of Women Living with PD - Pre, Peri, and Post Menopause*
January 2023 - present
2,219
Female participants with PD
Understanding OFF and ON in Parkinson’s disease Patients
November 2018 - December 2019
2,886
Participants with PD who report taking at least one PD-related medication
asterisk indicates questionnaires new since the 2020 version of the data descriptor.*
Thank you @jgottesman! This is very helpful. I ended up generating similar tables to these (extrapolating from the data dictionary) and have created the visualization. I’ll share with the group soon for feedback.
I’ve attached here a PDF report that features visualizations of the Fox Insight questionnaires on a timeline. I found it helpful to see these at a “bird’s eye view” to get a sense of each survey’s coverage across the lifespan of Fox Insight. For those that would like the data used for these visualizations, feel free to email me.
Any and all feedback is welcome! I’m happy to update these as the study progresses.
@mattk , this is great – one thought and one question.
First, I wonder if you think some additional language in the description would be useful? I was thinking something like:
Additional information can be found in the Resources section of Fox DEN (the data distribution platform for Fox Insight). These include the annotated data dictionary (which includes entries for each survey, including deployment and end dates, where applicable), the latest Schedule of Activities (which notes the frequency of administration of all surveys), and the survey questionnaires themselves.
I might also consider changing ‘several times’ to ‘on a recurring basis.’
Anyway, one other thought: would you be willing to upload this to the MJFF Zenodo if/when these changes are made? Would love there to be a way for other researchers to leverage this tool (and give you credit for it).
@jgottesman — yes! I’ll certainly incorporate these changes. I also thought of a few more visualizations that I think will be nice to have. I’ll incorporate these and send for your review.
Also, I’m more than happy to upload to MJFF’s Zenodo when ready. Thanks!
