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

Status: Recruiting
Location: See location...
Intervention Type: Other
Study Type: Interventional
Study Phase: Not Applicable

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.

Participation Requirements
Sex: All
Minimum Age: 40
Healthy Volunteers: Accepts Healthy Volunteers


• • 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.

United States
New York
University of Rochester Medical Center for Health + Technology
Contact Information
Benzi Kluger, MD
Yvonne Pohlson
(585) 276-8785
Time Frame
Start Date: April 26, 2022
Estimated Completion Date: August 31, 2026
Target number of participants: 710
Other: Usual Care
Community neurologists provide their usual care to enrolled participants. The clinicians may utilize other community resources to support patients and families as per their usual practice.
Other: Online Community-Supported Palliative Care Intervention
Community neurologists get training in palliative care via teleconferences (ECHO model), in addition to other support from our team. Patients and carepartners will also have access to additional support services when their providers enter the intervention (Online support groups, tailored education)
Collaborators: Massachusetts General Hospital, Stanford University, University of Colorado, Denver
Leads: University of Rochester

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