Idiopathic multicentric Castleman's disease: a systematic literature review.
Amy Y Liu, Christopher S Nabel, Brian S Finkelman...
https://pubmed.ncbi.nlm.nih.gov/27063975Actively Recruiting
All Genders
ID02817997
International Registry for Patients With Castleman Disease (ACCELERATE): Advancing Care Through a Longitudinal Registry and Research
Led by University of Pennsylvania · Updated on 2026-03-03
1000
Participants Needed
1
Research Sites
N/A
Total Duration
On this page
Sponsors
U
University of Pennsylvania
Lead Sponsor
E
EUSA Pharma, Inc.
Collaborating Sponsor
AI-Summary
What this Trial Is About
Researchers are collecting clinical, laboratory, and patient survey data from individuals with Castleman disease to enhance understanding, diagnosis, and treatment of this rare condition. Supported by the Castleman Disease Collaborative Network and funded by the FDA OOPD, this international registry aims to gather real-world data from 1000 patients worldwide to support future research efforts. Participants will enroll online and provide electronic medical records for data extraction by researchers at the University of Pennsylvania. Every three months, participants are asked to complete questionnaires about their symptoms, treatments, and experiences. The registry also tracks available tissue samples to build a "virtual biorepository" for research. Throughout the study, researchers will collect standardized demographic and longitudinal data, including common symptoms, laboratory abnormalities, treatments, survival, patient subtypes, clinical outcome measures, and biomarkers over a period of up to five years. All collected information is securely stored, and researchers interested in Castleman disease can request access to anonymized registry data to advance scientific knowledge.
CONDITIONS
Brief Title
International Registry for Patients With Castleman Disease
Who Can Participate
All Genders
Eligibility Criteria
You may qualify if you...
- Person of any age
- Have a reference pathology report suggesting Castleman disease (not limited to skin involvement) that can be uploaded
- Able to provide electronic informed consent according to local regulations
- Deceased patients may be enrolled if a pathology report suggesting Castleman disease is available or can be located and uploaded
You will not qualify if you...
- There are no exclusion criteria; the registry aims to include as wide a range of patients as possible
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
1
2
3
Your Study Journey
Screening
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
1 visit (online)
Long-term Monitoring
Duration - Up to 5 years
Participants provide medical data and complete questionnaires every three months about their symptoms, treatments, and experiences with Castleman Disease to help improve understanding of the disease.
Quarterly online questionnaires
Trial Site Locations
Total: 1 location
1
University of Pennsylvania
Philadelphia, Pennsylvania, United States, 19104
Actively Recruiting
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Research Team
J
Joshua Brandstadter, MD, PhD, MSc
B
Bridget Austin, MSc
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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Published Research Related To This Trial
HHV-8-negative, idiopathic multicentric Castleman disease: novel insights into biology, pathogenesis, and therapy.
David C Fajgenbaum, Frits van Rhee, Christopher S Nabel
https://pubmed.ncbi.nlm.nih.gov/24622327ACCELERATE: A Patient-Powered Natural History Study Design Enabling Clinical and Therapeutic Discoveries in a Rare Disorder.
Sheila K Pierson, Johnson S Khor, Jasira Ziglar...
https://pubmed.ncbi.nlm.nih.gov/33377129Plasma proteomics identifies a 'chemokine storm' in idiopathic multicentric Castleman disease.
Sheila K Pierson, Aaron J Stonestrom, Dustin Shilling...
https://pubmed.ncbi.nlm.nih.gov/29675946Identifying and targeting pathogenic PI3K/AKT/mTOR signaling in IL-6-blockade-refractory idiopathic multicentric Castleman disease.
David C Fajgenbaum, Ruth-Anne Langan, Alberto Sada Japp...
https://pubmed.ncbi.nlm.nih.gov/31408438Increased mTOR activation in idiopathic multicentric Castleman disease.
Daniel J Arenas, Katherine Floess, Dale Kobrin...
https://pubmed.ncbi.nlm.nih.gov/32206779Type I IFN response associated with mTOR activation in the TAFRO subtype of idiopathic multicentric Castleman disease.
Ruth-Anne Langan Pai, Alberto Sada Japp, Michael Gonzalez...
https://pubmed.ncbi.nlm.nih.gov/32376796International evidence-based consensus diagnostic and treatment guidelines for unicentric Castleman disease.
Frits van Rhee, Eric Oksenhendler, Gordan Srkalovic...
https://pubmed.ncbi.nlm.nih.gov/33284946Emerging role of 18F-FDG PET/CT in Castleman disease: a review.
Benjamin Koa, Austin J Borja, Mahmoud Aly...
https://pubmed.ncbi.nlm.nih.gov/33709329Validated international definition of the thrombocytopenia, anasarca, fever, reticulin fibrosis, renal insufficiency, and organomegaly clinical subtype (TAFRO) of idiopathic multicentric Castleman disease.
Yoshito Nishimura, David C Fajgenbaum, Sheila K Pierson...
https://pubmed.ncbi.nlm.nih.gov/34265103