Rare disease families: how do they really cope?

NCT ID NCT07497581

First seen Mar 30, 2026 · Last updated May 02, 2026 · Updated 4 times

Summary

This study looks at how children with rare diseases and their families adjust emotionally over time. Researchers will ask 240 families to fill out online surveys and some will also report daily feelings via smartphone. The goal is to learn what helps or hurts mental health and quality of life, so better support can be offered.

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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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Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • University Children's Hospital Zurich

    Zurich, 8008, Switzerland

Conditions

Explore the condition pages connected to this study.