Social Self-Management of Parkinson's Disease (NCT03938974) | Clinical Trial Compass
CompletedNot Applicable
Social Self-Management of Parkinson's Disease
United States146 participantsStarted 2013-09-23
Plain-language summary
Parkinson's disease (PD) affects 1% to 2% of the US population over age 60, and its prevalence is increasing as the population ages. The proposed research will establish the natural evolution of the social lives of people with Parkinson's disease and their families and its relationship to health outcomes, and thus has the potential to significantly advance Parkinson's disease research and evidence-based neurological nursing and rehabilitation. The project develops the new construct of social self-management of chronic disease and results will inform the development of new interventions aimed at supporting social integration and preventing isolation and loneliness in people living with Parkinson's disease.
Who can participate
Age range
18 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Inclusion criteria
. Diagnosis of idiopathic PD utilizing the UK Parkinson's Disease Society Brain Bank clinical diagnostic criteria, as evaluated by the neurological team
. Modified Hoehn and Yahr stage 1 through 4
. Score ≥ 26 on the Mini-Mental Status Exam
. Home setting within travel distance to study locations
. Able to communicate clearly and in English with research staff
. Interested in participating and willing and able to provide informed consent
. Person with PD must consent for care partner to participate
Questions worth asking your doctor
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
1Based on my diagnosis and history, is this trial worth exploring for me — or is there a standard treatment we should try first?
2What does this trial's phase tell us about how much is already known about its safety and benefit?
3What would taking part actually involve for me — visits, tests, time, and travel?
4What are the known and possible risks or side effects I should weigh, and how would they be monitored?
5If this trial isn't the right fit, what other options or trials would you suggest I look into?
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
Questions for the trial coordinator
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
1What does taking part actually involve week to week — how many visits, where, and how long does each one take?
2What costs are covered by the study, and what might I have to pay for myself, including travel, parking, or time off work?
3What happens during screening, and what happens if the study team confirms I don't meet the criteria after those tests?
4Who pays for the scans, blood work, and other tests the trial requires — the study, my insurance, or me?
5How will being in the trial affect my regular care, and will my own doctor stay informed and involved?
6Can I leave the trial at any point if I change my mind, and what would happen to my care if I do?
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
What they're measuring
1
Activity Retention Over Time
Timeframe: 3 Years
2
The Chronic Illness Resources Survey (CIRS)
Timeframe: 3 Years
3
Social Network Composition
Timeframe: 3 Years
4
Contact Frequency
Timeframe: 3 years
5
Support Exchange
Timeframe: 3 Years
6
Social Isolation Domain of the Nottingham Health Profile (NHP)
Timeframe: 3 Years
7
The Positive Social Interaction subscale items of the Medical Outcomes Study: Social Support Survey (MOS)