Exploring the potential for ENGAGE-PD physical activity coaching in the NHS for people newly diagnosed with Parkinson’s: perspectives of people with lived experience of Parkinson’s

Exploring ENGAGE-PD physical activity coaching in the NHS for people newly diagnosed with Parkinson’s: perspectives of people with lived experience of Parkinson’s using Group Concept Mapping

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

ISRCTN

Registry ID

ISRCTN92289230

Enrollment

Registered

2025-11-11

Start date

2025-06-17

Completion date

Unknown

Last updated

2025-11-24

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

Conditions

Parkinson's disease Nervous System Diseases

Interventions

The first stage in developing a UK version of the ENGAGE-PD physical activity coaching intervention to test in a future feasibility trial is consulting with people with lived experience of Parkinson’s

Eligibility

Sex/Gender

All

Age

18 Years to No maximum

Inclusion criteria

Inclusion criteria: 1. Adults aged 18 years or over 2. Lived experience of Parkinson’s: at least 75% of participants with a neurologist-confirmed diagnosis of idiopathic Parkinson’s. The aim is that half of the PwP will be within 5 years of diagnosis to support recall of relevant lived experience. Up to 25% of the overall sample can be Parkinson’s care partners. 3. Participants able to provide informed consent and, either independently or with the assistance of an appropriate care partner, review English-language study paperwork and fill in questionnaires (although budget is available for translation of resources into one other language)

Exclusion criteria

Exclusion criteria: 1. People or care partners of people without a confirmed idiopathic Parkinson’s diagnosis 2. People without capacity to provide informed consent.

Design outcomes

Primary

Measure	Time frame
Likert ratings for the Importance and Feasibility of each idea generated by the group will be collected at the rating stage of the project (weeks 6 to 8) in the following format: On a scale of 1 to 4, please rate how relatively important you think each idea is to engage people newly diagnosed with physical activity: 1 = relatively unimportant, 2 = slightly important, 3 = moderately important, 4 = very/extremely important. On a scale of 1 to 4, please rate how realistic you think it is for each idea to be included in National Health Service rehabilitation: 1 =relatively unrealistic, 2 =slightly realistic, 3 = moderately realistic, 4 = very/extremely realistic.	—

Measure

Time frame

Likert ratings for the Importance and Feasibility of each idea generated by the group will be collected at the rating stage of the project (weeks 6 to 8) in the following format: On a scale of 1 to 4, please rate how relatively important you think each idea is to engage people newly diagnosed with physical activity: 1 = relatively unimportant, 2 = slightly important, 3 = moderately important, 4 = very/extremely important. On a scale of 1 to 4, please rate how realistic you think it is for each idea to be included in National Health Service rehabilitation: 1 =relatively unrealistic, 2 =slightly realistic, 3 = moderately realistic, 4 = very/extremely realistic.

—

Secondary

Measure	Time frame
Participant demographic information for subgroup analysis will be collected from an anonymous participant questionnaire in week 1 of study data collection	—

Countries

England, United Kingdom

Contacts

Public ContactJonathan Gilby

jonathan.gilby@postgrad.plymouth.ac.uk+44 (0)7825016312

Outcome results

None listed

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