International Registry for Patients With Castleman Disease
This study is an international registry for people with Castleman disease, a rare condition involving enlarged lymph nodes (glands that are part of your immune system). It's not testing a new medicine or treatment, but rather collecting information from 1000 patients worldwide. The goal is to better understand Castleman disease, including its symptoms, lab results, and how it's treated. This information will help researchers improve diagnosis and care in the future. You can join if you have a pathology report (a medical report from examining tissue) suggesting Castleman disease and can provide electronic consent. Even deceased patients can be included if a pathology report is available. The study will look at common symptoms, lab abnormalities, and treatments over 5 years.
- Study design
- This is an observational study designed to collect data from 1000 participants with Castleman disease.
- What's involved
- Not specified in the trial record.
- Compensation
- Not stated in the trial record.
- Follow-up
- Participants' common symptoms, laboratory abnormalities, and treatments will be measured at 5 years.
AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.
International Registry for Patients With Castleman Disease
At a glance
Conditions
Where it's being run
1 sites across 1 statesStudy leadership
- Joshua Brandstadter, MD, PhD, MSc · PRINCIPAL_INVESTIGATOR · University of Pennsylvania
Who to contact
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Do you actually qualify for this trial?
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Inclusion
What this trial measures
- Common Symptoms5 years
There is no intervention tested in this registry. We want determine what are common symptoms are associated with Castleman Disease. We will be examining the number of instances various symptoms such as fatigue, malaise, fever are recorded in the medical records.
- Common Laboratory Abnormalities5 years
There is no intervention tested in this registry. We want determine what are common laboratory abnormalities associated with Castleman Disease. We will be examining the values of specific laboratory values associated with Castleman's Disease such as C-Reactive Protein (CRP), ferritin, and hemoglobin recorded in the medical records.
- Treatment5 years
There is no intervention tested in this registry. We want determine what are common treatments used for patients with Castleman Disease. We will be examining the number of instances specific treatments such as steroids and chemotherapy are recorded in the medical records.
- Survival5 years
There is no intervention tested in this registry. Distribution of time-to-event variables will be estimated using standard survival analysis methods, including Kaplan-Meier product-limit survival curves. The median time to event with 2-sided 95% confidence intervals will be estimated.
- Identify patient subtypes4 years
We will use data collected through this study to identify patient subgroups, particularly those that are not responsive to current treatments
- Identify clinical outcome measures4 years
We will use data collected through this study to determine the optimal parameters for overarching clinical outcome measures for use in future trials
- Identify clinical biomarkers4 years
We will use data collected through this study to identify biomarkers of treatment response