New tool aims to ease pain in kids with brain disabilities

NCT ID NCT06075797

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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 Results may not be published yet.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
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Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study tested whether a program called PQ-ResPOND could help manage pain in children with severe neurologic disabilities like cerebral palsy. About 54 children and their parents took part, with some receiving the program (surveys plus a palliative care team consult) and others getting usual care. The goal was to see if a larger study is possible and if the program might reduce pain.

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

54 people

The number who actually took part.

Started

May 2024

Finished

Jul 2025

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

1 year and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

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: * Parent-child dyads will be included based on the following criteria: Child participants will be selected from the base population of patients who are: * ≥ 1 year old, * receiving routine (ongoing) care at Boston Children's Hospital, AND * followed by the Neurology, Cerebral Palsy or Complex Care services. All patients from the base population will be screened to include any patient who: * has severe neurological impairment, defined as: * a Central Nervous System disorder resulting in motor and cognitive impairment and an inability to communicate either verbally or through sign language, AND * has complete caregiver dependency for activities of daily living AND * date of diagnosis of SNI is ≥ 4 months prior to the date of screening Exclusion Criteria: * Parent-child dyads will be excluded if any of the following apply: * the child, * is already followed by the palliative care team, OR * is not expected to survive at least 2 months after enrollment; OR * does not have "moderate to severe recurrent pain", as measured through the baseline Child Pain Survey (PPP). Specifically, we will exclude participants whose: * "Good days" AND "Difficult days" PPP scores are \<14, AND * "Most troublesome pain" PPP score is \<30, AND * Number of "difficult days" are \<8 in past month, AND * Number of days with "most troublesome pain" are \<4 in past month; OR • both parents, * do not have legal guardianship, OR * are unable to read, write, and speak English OR Spanish * are unable to understand and complete surveys.

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Conditions

The condition(s) this trial relates to.

As listed by the trial registrant

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

Contacts and locations

Locations

  • Boston Children's Hospital

    Boston, Massachusetts, 02115, United States

  • Dana-Farber Cancer Institute

    Boston, Massachusetts, 02115, United States

  • Deakin University

    Burwood, Victoria, 3125, Australia

  • University of Alabama, Birmingham

    Birmingham, Alabama, 35294, United States

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