Study asks: what do caregivers of rare disease patients really need?

NCT ID NCT03990428

Summary

This study aims to understand the support needs of family and friends who provide unpaid care for people with rare histiocytic diseases like Erdheim-Chester disease. Researchers will survey 250 caregivers to learn about their challenges and quality of life. The goal is to gather information that could help improve future support services for these caregivers.

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Contacts and locations

Study contacts

  • Contact

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

  • Contact

    Phone: •••-•••-••••

Locations

  • Memorial Sloan Kettering Cancer Center

    RECRUITING

    New York, New York, 10065, United States

    Contact Phone: •••-•••-••••

    Contact

    Contact Phone: •••-•••-••••

Conditions

Explore the condition pages connected to this study.