Supportive Care Needs of Caregivers Clinical Trial
Official title:
A Study to Identify the Supportive Care Needs of Caregivers of Patients With Erdheim-Chester Disease and Other Histiocytic Diseases
| NCT number | NCT03990428 |
| Other study ID # | 19-213 |
| Secondary ID | |
| Status | Recruiting |
| Phase | |
| First received | |
| Last updated | |
| Start date | June 14, 2019 |
| Est. completion date | June 2024 |
This study is being done to answer the following question: What are the supportive care needs of informal caregivers of people with Erdheim-Chester disease and other histiocytic diseases?
| Status | Recruiting |
| Enrollment | 170 |
| Est. completion date | June 2024 |
| Est. primary completion date | June 2024 |
| Accepts healthy volunteers | Accepts Healthy Volunteers |
| Gender | All |
| Age group | 18 Years and older |
| Eligibility | Inclusion Criteria: - Self-identified informal caregiver (family member or friend who provides unpaid support) for a patient with Erdheim-Chester Disease (or LCH, RDD, or JXG for the exploratory aim). - Proficiency to complete study assessments in English, evaluated at the time of consent. - Age 18 or over. Exclusion Criteria: - Participant unwilling to sign consent. - Participant unable to complete web-based assessments. |
| Country | Name | City | State |
|---|---|---|---|
| United States | Memorial Sloan Kettering Cancer Center | New York | New York |
| Lead Sponsor | Collaborator |
|---|---|
| Memorial Sloan Kettering Cancer Center |
United States,
| Type | Measure | Description | Time frame | Safety issue |
|---|---|---|---|---|
| Primary | Supportive Care Needs of informal caregivers | measured by the McGill Quality of Life in Life Threatening Illness - Family Carer Version (QLLTI-FC) | 3 years |