New study aims to support families of children with rare diseases
NCT ID NCT06938542
First seen Jan 29, 2026 · Last updated May 16, 2026 · Updated 20 times
Summary
This study looks at the unmet palliative care needs of children with rare diseases and their family caregivers. Researchers will test a program called FACE-Rare to see if it helps families prepare for medical decisions and improves quality of life. About 480 families will take part, and the study will track things like caregiver stress, spiritual well-being, and how often the child uses healthcare services.
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Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.
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Locations
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Children's National Hospital
Washington D.C., District of Columbia, 20010, United States
Conditions
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