Improving palliative care for Parkinson's disease through community outreach

Building Online Community to Improve Patient and Caregiver Outcomes in Parkinson Disease, Lewy Body Dementia and Related Disorders

NA · University of Rochester · NCT05222386

This study is testing a new community-based palliative care approach for people with Parkinson's disease and Lewy Body Dementia to see if it improves their quality of life and helps their caregivers compared to regular care.

Quick facts

PhaseNA
Study typeInterventional
Enrollment710 (estimated)
Ages40 Years and up
SexAll
SponsorUniversity of Rochester (other)
Locations1 site (Rochester, New York)
Trial IDNCT05222386 on ClinicalTrials.gov

What this trial studies

This study aims to evaluate the effectiveness of a community-based palliative care model for patients with Parkinson's disease and Lewy Body Dementia. It involves training community physicians and providing telemedicine support to patients and their caregivers. The study will compare this novel approach to usual care over a period of time, assessing outcomes such as quality of life and caregiver burden. Participants will be recruited from 24 community neurology practices, with a stepped-wedge design allowing for gradual implementation of the intervention.

Who should consider this trial

Good fit: Ideal candidates include individuals over 40 years old diagnosed with Parkinson's disease or related conditions who have moderate to high palliative care needs.

Not a fit: Patients with additional medical illnesses requiring palliative services or those already receiving palliative care may not benefit from this study.

Why it matters

Potential benefit: If successful, this approach could significantly enhance the quality of life for patients with Parkinson's disease and their caregivers.

How similar studies have performed: Other studies have shown promise in using community-based palliative care models, but this specific approach is relatively novel.

Eligibility criteria

Show full inclusion / exclusion criteria
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.

Where this trial is running

Rochester, New York

Study contacts

How to participate

  1. Review the eligibility criteria above with your treating physician.
  2. Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
  3. Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.

View on ClinicalTrials.gov →

Conditions: Parkinson Disease Dementia, Parkinson Disease, Parkinson's Disease and Parkinsonism, Lewy Body Parkinsonism, Dementia With Lewy Bodies, Progressive Supranuclear Palsy, Corticobasal Degeneration, Multiple System Atrophy

Last reviewed 2026-05-15 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.