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Palliative Care for Parkinson's Disease (COPE-PD Trial)

N/A

Recruiting

Led By Benzi Kluger, MD

Research Sponsored by University of Rochester

Eligibility Criteria Checklist

Specific guidelines that determine who can or cannot participate in a clinical trial

Must have

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.

Be older than 18 years old

Must not have

Already receiving palliative care or hospice services.

Presence of additional medical illnesses which requires palliative services (e.g. metastatic cancer)

Timeline

Screening 3 weeks

Treatment Varies

Follow Up 3, 6, 9, 12 months

Awards & highlights

No Placebo-Only Group

Summary

This trial will test if palliative care training for doctors and telemedicine support services improve quality of life for patients with Parkinson's disease and Lewy Body Dementia.

Who is the study for?

This trial is for people over 40 with Parkinson's disease or related conditions like progressive supranuclear palsy, multiple system atrophy, and Lewy Body Dementia. It's not for those who can't commit to the study, need palliative care for other illnesses like advanced cancer, or are already receiving palliative or hospice care.

What is being tested?

The study tests how effective it is when community doctors get training in palliative care and patients along with their caregivers receive support through telemedicine. Palliative care aims to improve life quality by easing physical pain, depression, social issues, and spiritual needs using technology.

What are the potential side effects?

Since this trial focuses on non-medical interventions like education and telemedicine support services rather than drugs or medical procedures, traditional side effects are not a concern here.

Eligibility Criteria

Inclusion Criteria

You may be eligible if you check “Yes” for the criteria below

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I am over 40 and diagnosed with Parkinson's or a similar condition.

Exclusion Criteria

You may be eligible for the trial if you check “No” for criteria below:

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I am currently receiving care to ease symptoms or hospice services.

Select...

I have a serious illness that needs comfort care, like metastatic cancer.

Timeline

Screening ~ 3 weeks3 visits

Treatment ~ Varies

Follow Up ~ 3, 6, 9, 12 months

Screening ~ 3 weeks

Treatment ~ Varies

Follow Up ~3, 6, 9, 12 months

This trial's timeline: 3 weeks for screening, Varies for treatment, and 3, 6, 9, 12 months for reporting.

Treatment Details

Study Objectives

Study objectives can provide a clearer picture of what you can expect from a treatment.

Primary study objectives

Quality of Life: Alzheimer's Disease (QOL-AD)

Zarit Caregiver Burden Interview short form (ZBI)

Secondary study objectives

Carepartner Measures (FACIT-SP 12)

Carepartner Measures Hospital Anxiety and Depression Scale

Patient Measures (FACIT-SP 12)

+3 more

Other study objectives

Qualitative Interviews: Carepartner (Health Economic data)

Qualitative Interviews: Carepartner (Validate data)

Qualitative Interviews: Clinician

+2 more

Awards & Highlights

No Placebo-Only Group

All patients enrolled in this study will receive some form of active treatment.

Trial Design

2Treatment groups

Experimental Treatment

Group I: Usual CareExperimental Treatment1 Intervention

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.

Group II: Online Community-Supported Palliative Care InterventionExperimental Treatment1 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)

0 / 3Eligibility criteria met