Community Outreach for Palliative Engagement -- Parkinson Disease (COPE-PD)

  • End date
    Aug 31, 2026
  • participants needed
  • sponsor
    University of Rochester
Updated on 10 May 2022
parkinson's disease
progressive supranuclear palsy
lewy body dementia
supranuclear palsy
Accepts healthy volunteers


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.


Investigators propose to conduct a pragmatic stepped-wedge comparative effectiveness trial comparing a novel model of providing community-based palliative care for persons living with Parkinson's disease (PD), Lewy Body Dementia (LBD) and related disorders through online communities to usual care. Our intervention includes support for both community neurologists (using the ECHO model of clinician support) as well as family caregivers and patients. Investigators hypothesize that this model of care will improve patient quality of life and caregiver burden as well as other important secondary outcomes such as patient symptom burden and clinician burnout. This study will recruit neurology providers (MD and APPs) from 24 community neurology practices. These practices will identify participants for the study who have PD, LBD or a related condition and moderate to high palliative care needs. Under usual care, community providers will deliver their usual care and center coordinators will collect data on our outcomes every 3 months. After one year of baseline data collection, 6 practices will be randomized to the intervention, which will include clinician training and coaching as well as access to online services for their patients. Per the stepped-wedge design an additional six practices will be randomized 18 months into the data collection period, six at 24 months, and the final six will enter the intervention 30 months into the data collection period to allow for 12 months intervention recruitment for all practices.

Condition 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, Vascular Parkinsonism
Treatment Parkinson Disease Standard Care, Online Community-Supported Palliative Care
Clinical Study IdentifierNCT05222386
SponsorUniversity of Rochester
Last Modified on10 May 2022


Yes No Not Sure

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

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
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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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