Development, validation of a novel symptom burden scale to assess and quantify the burden experienced by people living with Idiopathic Multicentric Castleman Disease (iMCD).
Age range
18 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
Long list of candidate items for the scale (stage 1)
Timeframe: Sept 2023 - Nov 2023
Completion of interviews (stage 2)
Timeframe: Within 6 months from start (With this being a rare condition, data from all patients will be collected at various levels of treatment and time from diagnosis)
Completion of questionnaire (stage 3)
Timeframe: Within 9 months from start (With this being a rare condition, data from all patients will be collected at various levels of treatment and time from diagnosis). NB: Advisory comments noted.
Completion of follow-up questionnaire (stage 4a)
Timeframe: About 8 weeks after Stage 3 questionnaire. Note: Advisory comments noted.
Completion of interviews (stage 4b)
Timeframe: About 4 weeks after Stage 4a