The 100 for Parkinson’s Project: a new form of social action – the collection and donation of data by patients and the public - to improve treatment and self-care for Parkinson’s Disease.

The 100 for Parkinson’s Project: a web and smartphone based cross-sectional study on links between health self management and quality of life in Parkinson’s disease v9

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

ISRCTN

Registry ID

ISRCTN12537885

Enrollment

20000

Registered

2016-01-13

Start date

2016-01-11

Completion date

Unknown

Last updated

2021-05-24

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Parkinson's disease Mental and Behavioural Disorders

Interventions

Participants will use their own smartphones to download and use the (free) uMotif self-management app for 100 days. This application assists people in tracking and self-managing their health to impro

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: 1. Adults aged over 18 2. English speaking and literate i.e. can read, write, and speak in English at levels of proficiency necessary to function daily at job and/or daily living 3. Have access to a smartphone and/or tablet on a daily basis 4. Parkinson's sufferers 5. Friends and families of people with Parkinson's 6. Other interested members of the public

Exclusion criteria

Exclusion criteria: Participants not fulfilling the eligibility criteria

Design outcomes

Primary

Measure	Time frame
Engagement, which is defined by understanding how people use the app to self-manage their condition (i.e. Parkinson’s) or their health (i.e. if participant doesn’t have Parkinson’s). Engagement will be categorised under the following: 1. Number of times any data is logged into the app in a day 2. Number of times any data logged into the app in a week 3. Type of data logged in a day and a week: 3.1. Self-tracking measure (via motif interface) 3.2. Medication reminder 3.3. Task reminder 3.4. Diary note 3.5. Playing the finger tap test 4. Data from any linked devices such as pedometers or weighing scales	—

Measure

Time frame

Engagement, which is defined by understanding how people use the app to self-manage their condition (i.e. Parkinson’s) or their health (i.e. if participant doesn’t have Parkinson’s). Engagement will be categorised under the following: 1. Number of times any data is logged into the app in a day 2. Number of times any data logged into the app in a week 3. Type of data logged in a day and a week: 3.1. Self-tracking measure (via motif interface) 3.2. Medication reminder 3.3. Task reminder 3.4. Diary note 3.5. Playing the finger tap test 4. Data from any linked devices such as pedometers or weighing scales

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Secondary

Measure	Time frame
1. The relationship between self-management data collected using the app and key health outcomes collected using standardised measures: 1.1. Quality of life (EQ-5D, PDQ- 8) 1.2. Non-motor symptoms of Parkinson’s (NMS-Quest) 2. The comparability of data from games (i.e. finger tapping test) delivered through smartphones and tablets with those collected at clinics in previous studies Participants without Parkinson’s will not complete the NMS-30 or PDQ-8 questionnaires specific to Parkinson’s, but both groups will capture the same quality of life questionnaire data (EQ5D).	—

Measure

Time frame

1. The relationship between self-management data collected using the app and key health outcomes collected using standardised measures: 1.1. Quality of life (EQ-5D, PDQ- 8) 1.2. Non-motor symptoms of Parkinson’s (NMS-Quest) 2. The comparability of data from games (i.e. finger tapping test) delivered through smartphones and tablets with those collected at clinics in previous studies Participants without Parkinson’s will not complete the NMS-30 or PDQ-8 questionnaires specific to Parkinson’s, but both groups will capture the same quality of life questionnaire data (EQ5D).

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Countries

United Kingdom

Outcome results

None listed

Source: ISRCTN (via WHO ICTRP) · Data processed: Feb 4, 2026