Pediatric Palliative Care for Rare Diseases
(FACE-Rare Trial)
Trial Summary
Do I need to stop my current medications to join the trial?
The trial information does not specify whether participants need to stop taking their current medications.
What data supports the effectiveness of the treatment Family Centered pediatric palliative care for rare diseases?
Research shows that family-centered pediatric palliative care improves the quality of life for children with life-limiting illnesses and their families by enhancing emotional well-being and preparing parents for end-of-life care. This approach focuses on improving outcomes in physical, emotional, and cognitive areas, benefiting both the child and their family.12345
Is pediatric palliative care safe for children with rare diseases?
How is the Family Centered pediatric palliative care treatment different from other treatments for rare diseases?
Family Centered pediatric palliative care is unique because it focuses on improving the quality of life for children with life-threatening conditions and their families, rather than just treating the disease. It emphasizes support for both the child and family, helping them manage symptoms and make complex decisions, which is especially important for rare diseases with uncertain outcomes.1291011
What is the purpose of this trial?
The palliative care needs of family caregivers of children with rare diseases and their children are largely unmet, including the need for support to prepare for future medical decision making. This trial will test the FACE-Rare intervention to see if investigators can identify and meet those needs; and if FACE-Rare effects family caregivers' quality of life and child healthcare utilization. Finally, investigators will determine if the intersectionality of child-sex, family-race, Federal poverty level, and social connection influences family quality of life and child health care utilization longitudinally.
Research Team
Maureen E Lyon, PhD
Principal Investigator
Children's National Research Institute
Eligibility Criteria
This trial is for family caregivers of children with various rare diseases, including genetic syndromes and chronic conditions. Caregivers must be in need of support for medical decision-making and coping with their child's illness.Inclusion Criteria
Exclusion Criteria
Timeline
Screening
Participants are screened for eligibility to participate in the trial
Intervention
FACE-Rare intervention consisting of CSNAT-P Sessions 1 & 2 and Next Steps: Respecting Choices Session 3
Follow-up
Participants are monitored for quality of life and healthcare utilization at multiple time points
Treatment Details
Interventions
- Family Centered pediatric palliative care
Find a Clinic Near You
Who Is Running the Clinical Trial?
Children's National Research Institute
Lead Sponsor
Akron Children's Hospital
Collaborator
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Collaborator
Stanford University
Collaborator