Community Outreach for Palliative Engagement -- Parkinson Disease (NCT05222386) | Clinical Trial Compass
Active — Not RecruitingNot Applicable
Community Outreach for Palliative Engagement -- Parkinson Disease
United States632 participantsStarted 2022-04-26
Plain-language summary
The purpose of this study is to learn more about the effectiveness of palliative care training for community physicians and telemedicine support services for patients and carepartners with Parkinson's disease and Lewy Body Dementia (LBD) or related conditions and their care partners. Palliative care is a treatment approach focused on improving quality of life by relieving suffering in the areas of physical symptoms such as pain, psychiatric symptoms such as depression, psychosocial issues and spiritual needs. Telemedicine is the use of technology that allows participants to interact with a health care provider without being physically near the provider.
Who can participate
Age range
40 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:
PATIENT INCLUSION CRITERIA:
• Over age 40 years and diagnosed with PD or other causes of parkinsonism, such as progressive supranuclear palsy, multiple system atrophy and Lewy Body Dementia by their community neurologist.
Exclusion Criteria:
PATIENT EXCLUSION CRITERIA:
* Potential patient subjects who are unable or unwilling to commit to study procedures
* Presence of additional medical illnesses which requires palliative services (e.g. metastatic cancer)
* Already receiving palliative care or hospice services.
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.
1This trial focuses on palliative care support for people with Parkinson's and related conditions like Lewy body dementia and progressive supranuclear palsy — could palliative engagement be a helpful approach for managing my specific diagnosis right now, even outside of a clinical trial?
2The trial is measuring caregiver burden alongside patient quality of life — does that mean the program involves my family caregiver too, and is that something worth exploring given our situation at home?
3Since the trial is no longer enrolling new participants, are there similar community-based palliative care programs for Parkinson's-related conditions that my care team could refer us to instead?
4This study is in Phase NA, which often means it's testing a care delivery approach rather than a drug — can you help me understand what 'community outreach for palliative engagement' actually looks like in practice, and whether that kind of support is available to us through your practice or a local hospice or palliative care team?
5Given that my condition could fall under one of several Parkinson's-related diagnoses being studied here, would you say my current stage of illness is one where shifting some focus toward quality of life and caregiver support makes sense alongside my standard treatment?
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.