Producing a Novel Symptom Burden Scale for People Living With Idiopathic Multicentric Castleman Disease (ISBUS)

UnknownOBSERVATIONAL
Enrollment

100

Participants

Timeline

Start Date

October 31, 2023

Primary Completion Date

December 31, 2024

Study Completion Date

December 31, 2024

Conditions
Idiopathic Multicentric Castleman's Disease
Interventions
OTHER

Research questions

"Stage 1: Secondary analysis of a previous international survey to identify items~Stage 2: Cognitive debriefing interviews with about 10 people living with iMCD to assess the content validity of the items~Stage 3: Completion of questionnaire to finalise scale~Stage 4a: Re-administering of follow-up questionnaire to Stage 3 patients to assess minimally important clinical difference. Test-retest will be calculated only in patients exhibiting no change.~Stage 4b: Qualitative interviews with a subset of participants from Stages and 4 to help with interpretation of meaningful difference from their perspective"

Sponsors

Collaborators (1)

All Listed Sponsors
collaborator

University of Sheffield (ScHARR)

UNKNOWN

collaborator

KMC Health Care

UNKNOWN

collaborator

Castleman Disease Collaborative Network (CDCN)

UNKNOWN

lead

RECORDATI GROUP

INDUSTRY

NCT05995834 - Producing a Novel Symptom Burden Scale for People Living With Idiopathic Multicentric Castleman Disease (ISBUS) | Biotech Hunter | Biotech Hunter