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Planning ahead: could a simple program transform Parkinson's care?

NCT ID NCT05954013

Disease control Sponsor: Radboud University Medical Center Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Aug 14, 2026 · Last updated Aug 14, 2026

Summary

This trial tests a program called PD_Pal, where a specially trained nurse helps people with Parkinson's and their family caregivers create a personalized care plan. The plan covers current care, future needs, and end-of-life preferences, aiming to ensure that care matches what the person wants. The study compares this approach to usual care across seven European countries, measuring whether more participants have their care preferences documented in medical records after six months. It also looks at quality of life, care coordination, and cost-effectiveness.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

Active substance
PD_Pal intervention: a nurse-led program combining advance care planning conversations and care coordination, supported by a Parkinson Support Plan workbook
What this could lead to
If effective, this program could become a standard way to help people with Parkinson's and their families plan future care, improving quality of life and ensuring care matches personal preferences.
What could go wrong
The trial is relatively small and open-label, so results may be influenced by expectations. The intervention's success depends on nurse training and patient engagement, which may vary across countries.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Phase

Not a phased trial

Phase numbers describe drug development. The registry uses this when they do not apply, as it does for trials of devices, procedures or behaviour changes, and for observational studies.

Participants

189 people

The number who actually took part.

Started

Aug 2020

Finished

Mar 2023

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion criteria for people with Parkinson's disease: * Capable to participate , meaning that the subject is able to: * understand information about the decision * remember that information * use that information to make a decision * communicate their decision by talking, using sign language or any other means * Able to provide informed consent; * Meeting the MDS clinical diagnostic criteria for PD, including Parkinsonisms; * Hoehn \& Yahr ≥ 3; * Progressive deterioration in physical and/or cognitive function despite optimal therapy, according to the primary physician; and * Availability of a family caregiver or informal caregiver. Exclusion Criteria: * Inability to communicate independently, with or without supportive communication tools; - Unable or unwilling to commit to study procedures; * Presence of additional chronic medical illnesses which may require palliative services (e.g. metastatic cancer); * Already receiving palliative care or hospice services; * Already participating in a clinical study for palliative care. Inclusion criteria for family caregivers (FCs): * Identified by the patient as the person closest to them; * Willing to provide written informed consent; * Willing and able to complete questionnaires; * Aging ≥ 18 years. FC can only participate when the patient participates.

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Conditions

The condition(s) this trial relates to.

Parkinson disease parkinsonian disorder

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Parkinson disease Parkinsonism

Contacts and locations

Locations

  • Estonian Movement Disorders Society

    Tartu, Estonia

  • Paracelsus Medical University

    Salzburg, Austria

  • Philipps University Marburg Medical Center

    Marburg, Germany

  • Skane University Hospital

    Lund, Sweden

  • University College, London

    London, United Kingdom

  • University of Ioannina

    Ioannina, Greece

  • University of Padova

    Padova, Italy

More trials for these conditions

Other studies related to the condition(s) this trial covers.