Clinical Research Directory

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Arthrogryposis Congenita Multiplex With Intestinal Atresia

Tundra lists 1 Arthrogryposis Congenita Multiplex With Intestinal Atresia clinical trial. Each listing includes eligibility criteria, study locations, and direct links to research sites in the Tundra directory.

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ENROLLING BY INVITATION

NCT06938542

Palliative Care Needs of Children With Rare Diseases and Their Families

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.

Gender: All

Ages: 12 Months - 99 Years

Updated: 2026-01-28

1 state

Trisomy 13 Syndrome

Arthrogryposis Congenita Multiplex With Intestinal Atresia

Asparagine Synthetase Deficiency

+16