New tool aims to ease pain in kids with brain disabilities
NCT ID NCT06075797
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.
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Study facts
What this study's own registry entry says, in plain language.
- Phase
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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
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54 people
The number who actually took part.
- Started
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May 2024
- Finished
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Jul 2025
- Lead sponsor
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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
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1 year and older
- Sex
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Anyone
- Healthy volunteers
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Not accepted
This study is not open to healthy volunteers. The entry requirements below say who it is open to.
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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
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Boston Children's Hospital
Boston, Massachusetts, 02115, United States
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Dana-Farber Cancer Institute
Boston, Massachusetts, 02115, United States
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Deakin University
Burwood, Victoria, 3125, Australia
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University of Alabama, Birmingham
Birmingham, Alabama, 35294, United States
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