Clinical Trial Update: Palliative Care Needs of Children With Rare Diseases and Their Families [NA]

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Summary

This entry announces an ongoing study evaluating palliative care needs of children with rare diseases and their families, currently enrolling by invitation.

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Diseases / indications

• Arthrogryposis Congenita Multiplex with Intestinal Atresia
• Asparagine Synthetase Deficiency
• Charge Syndrome
• Foxg1 Syndrome
• Infantile Epileptic Encephalopathy
• Kbg Syndrome
• Noonan Syndrome
• Trisomy 13 Syndrome

Snippet

Sponsor: Children's National Research Institute | Conditions: Trisomy 13 Syndrome, Arthrogryposis Congenita Multiplex With Intestinal Atresia | NA | Status: ENROLLING_BY_INVITATION