Palliative Care Needs of Children With Rare Diseases and Their Families

Launched by CHILDREN'S NATIONAL RESEARCH INSTITUTE · Apr 14, 2025

Keywords

ClinConnect Summary

This clinical trial is focused on understanding the palliative care needs of children with rare diseases and their families. Palliative care is specialized medical care that aims to improve the quality of life for patients and their families, especially when dealing with serious conditions. The trial will test a program called FACE-Rare to see if it can help meet these needs, support families in making important medical decisions, and improve the overall well-being of both the caregivers and the children. Researchers will also look at how factors like the child’s gender, family’s race, income level, and social connections affect caregivers’ quality of life and healthcare for the child over time.

To participate in the trial, children must be between 1 and 17 years old and have a rare disease as defined by specific guidelines. They should not be in intensive care or have a Do Not Resuscitate order in place. Family caregivers must be at least 18 years old and be the legal guardian of the child. A support person chosen by the caregiver can also join. The trial is not yet recruiting participants, but those who do join can expect to receive support and resources tailored to their unique needs as they navigate the challenges of caring for a child with a rare condition.

Gender

ALL

Eligibility criteria

• Child inclusion criteria:
• • ≥1.0 years and \<18.0 years at enrollment.
• • Unable to participate in end-of-life care decision-making.
• • Has a rare disease as operationally defined by NIH's Genetic and Rare Diseases Information Center (GARD).
• • Not under a Do Not Resuscitate Order or Allow a Natural Death Order.
• • Not in the Intensive Care Unit.
• Family caregiver inclusion criteria:
• • \> 18.0 years at enrollment.
• • Child's family caregiver/legal guardian.
• • Not known to be developmentally delayed.
• Support person inclusion criteria:
• • \> 18.0 years at enrollment.
• • Chosen by family caregiver.
• • Not known to be developmentally delayed.
• Exclusion Criteria:
• • Family caregiver or support person is actively homicidal, suicidal, or psychotic at the time of enrollment.