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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
Timeline
Screening 3 weeks
Treatment Varies
Follow Up 3, 6, 9, 12 months
Awards & highlights

COPE-PD Trial 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.Check my eligibility
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.See study design
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.

COPE-PD Trial Eligibility Criteria

Inclusion Criteria

You may be eligible if you check “Yes” for the criteria below
Select...
I am over 40 and diagnosed with Parkinson's or a similar condition.

COPE-PD Trial Timeline

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

Outcome measures can provide a clearer picture of what you can expect from a treatment.
Primary outcome measures
Quality of Life: Alzheimer's Disease (QOL-AD)
Zarit Caregiver Burden Interview short form (ZBI)
Secondary outcome measures
Carepartner Measures (FACIT-SP 12)
Carepartner Measures Hospital Anxiety and Depression Scale
Patient Measures (FACIT-SP 12)
+3 more
Other outcome measures
Qualitative Interviews: Carepartner (Health Economic data)
Qualitative Interviews: Carepartner (Validate data)
Qualitative Interviews: Clinician
+2 more

COPE-PD 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)

Find a Location

Who is running the clinical trial?

University of RochesterLead Sponsor
836 Previous Clinical Trials
517,458 Total Patients Enrolled
University of Colorado, DenverOTHER
1,732 Previous Clinical Trials
2,142,838 Total Patients Enrolled
Stanford UniversityOTHER
2,386 Previous Clinical Trials
17,333,298 Total Patients Enrolled

Media Library

Usual Care Clinical Trial Eligibility Overview. Trial Name: NCT05222386 — N/A
Parkinson's Disease Research Study Groups: Usual Care, Online Community-Supported Palliative Care Intervention
Parkinson's Disease Clinical Trial 2023: Usual Care Highlights & Side Effects. Trial Name: NCT05222386 — N/A
Usual Care 2023 Treatment Timeline for Medical Study. Trial Name: NCT05222386 — N/A
Parkinson's Disease Patient Testimony for trial: Trial Name: NCT05222386 — N/A

Frequently Asked Questions

These questions and answers are submitted by anonymous patients, and have not been verified by our internal team.

What is the sample size of this scientific experiment?

"Affirmative. Clinicaltrials.gov indicates that this trail is currently recruiting participants, with the initial posting date being April 26th 2022 and last update on May 2nd 2022. The study requires 710 trialists to be sourced from 1 location."

Answered by AI

Could you elucidate the key aims of this research endeavor?

"The primary measure of success for this 6-month trial is the Quality of Life: Alzheimer's disease (QOL-AD) scale. Additionally, Carepartner Measures: Functional Assessment of Chronic Illness Therapy-Spiritual Wellbeing (FACIT-SP 12 Item), Patient Measures Prolonged Grief Questionnaire (PG-12), and Edmonton Symptom Assessment Scale will be assessed to ascertain secondary objectives. Respectively, these scales range from 10 - 50; 0 – 130 with higher scores indicating a worse outcome; and 1–10 per item respectively."

Answered by AI

Are there any opportunities to join the current research endeavor?

"Affirmative. Records on clinicaltrials.gov support that this research is currently recruiting patients; it was first posted on April 26th 2022 and most recently modified May 2nd 2022. 710 individuals need to be enrolled at one medical site for the study's completion."

Answered by AI

Who else is applying?

What state do they live in?
North Carolina
New York
What site did they apply to?
University of Rochester Medical Center for Health + Technology
What portion of applicants met pre-screening criteria?
Met criteria
Did not meet criteria
How many prior treatments have patients received?
0

Why did patients apply to this trial?

I’ve tried 2 drugs unsuccessfully. Physical therapy and speech therapy are no longer helpful. I am interested in knowing the benefits of palliative care. I am unable to speak coherently so my spouse Daniel would speak for me.
PatientReceived no prior treatments
I’ve tried 2 drugs unsuccessfully. Physical therapy and speech therapy are no longer helpful. I am interested in the knowing the benefits of palliative care. I am unable to speak coherently so my spouse Daniel would speak for me.
PatientReceived no prior treatments

How responsive is this trial?

Typically responds via
Email
Most responsive sites:
  1. University of Rochester Medical Center for Health + Technology: < 24 hours
Average response time
  • < 1 Day
~340 spots leftby Feb 2026