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NCT Number: NCT02817997

International Registry for Patients With Castleman Disease

The purpose of this study is to collect clinical, laboratory, and patient survey data from patients with Castleman disease to improve understanding, diagnosis, and treatment of the disease. Funding source - FDA OOPD.

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Key information

Conditions

Castleman Disease Angiofollicular Lymph Hyperplasia Angiofollicular Lymph Node Hyperplasia Angiofollicular Lymphoid Hyperplasia Castleman's Disease GLNH Giant Lymph Node Hyperplasia Hemic and Lymphatic Diseases Hyperplasia, Giant Lymph Node Immune System Diseases Immunoproliferative Disorders Lymph Node Hyperplasia, Giant Lymphatic Diseases Lymphoproliferative Disorders Macular dystrophy, corneal type 1 Multi-centric Castleman's Disease

Sex eligibility

All sexes

Study type

Observational

Primary location

University of Pennsylvania

Philadelphia, Pennsylvania, 19104, United States

Location status: Recruiting

Location contact

Bridget Austin, MSc

CONTACT

[email protected]

267-586-9977

Joshua Brandstadter, MD, PhD, MSc

CONTACT

[email protected]

267-847-8220

Joshua C Brandstadter, MD, PhD, MSc

PRINCIPAL_INVESTIGATOR

About this study

This project is supported by the Castleman Disease Collaborative Network.

Visit the CDCN website at http://www.cdcn.org/accelerate to sign up for the ACCELERATE registry!

The ACCELERATE patient registry will give patients and families the opportunity to contribute their medical data to improve understanding of Castleman Disease. The patient registry will obtain real-world demographic, clinical, laboratory, and patient reported outcomes, and treatment data from 1000 patients worldwide with Castleman Disease.

This registry will help to provide important data for future Castleman Disease research studies. The patient registry helps centralize information on this rare disease, and provides researchers a way to obtain data on Castleman Disease patients. The major objectives for the registry include:

  • Improve our understanding of the natural history (signs, symptoms, laboratory values, survival data, outcome predictors), pathogenesis, and treatment of Castleman disease by collecting a standardized set of demographic and longitudinal data from CD patients,
  • Build capacity for collaboration between patients, providers, researchers, and industry by collecting clinical data and tracking the location of all available tissue samples for future studies ("virtual biorepository"), and
  • Assemble "real-world" data related to burden of disease, treatments used, tolerability, and safety data.

Individuals affected by Castleman Disease and families of deceased patients are invited to join the registry.

Patients located anywhere in the United States of America (USA), Canada, or rest of world will be able to enroll themselves directly into the registry. Participants will enroll online and be asked to provide their electronic medical records to University of Pennsylvania researchers for data extraction. All patients will also be asked to complete questionnaires every three months about their symptoms, treatments, and experiences with Castleman Disease. Complete participant information will be stored in a secure database.

Researchers who are interested in studying Castleman Disease can also request access to registry datasets.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • Person of any age
  • Have a reference pathology report suggesting "Castleman disease" not limited to cutaneous involvement only that can be uploaded
  • Be able to provide electronic informed consent, as per local regulations
  • Deceased patients may also be enrolled when a reference pathology report suggesting "Castleman disease" can be supplied or when the ART is able to locate and upload such a pathology report.

Exclusion criteria

  • Because this registry is designed to provide as wide a picture of routine clinical practice as possible, inclusion criteria are set deliberately wide and there are no exclusion criteria.

Treatment and study plan

Primary outcomes

  1. Common Symptoms

    Time frame: 5 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.

  2. Common Laboratory Abnormalities

    Time frame: 5 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.

  3. Treatment

    Time frame: 5 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.

  4. Survival

    Time frame: 5 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.

  5. Identify patient subtypes

    Time frame: 4 years

    We will use data collected through this study to identify patient subgroups, particularly those that are not responsive to current treatments

  6. Identify clinical outcome measures

    Time frame: 4 years

    We will use data collected through this study to determine the optimal parameters for overarching clinical outcome measures for use in future trials

  7. Identify clinical biomarkers

    Time frame: 4 years

    We will use data collected through this study to identify biomarkers of treatment response

Study contacts

Contact information is provided by the study sponsor or research team.

Bridget Austin, MSc

CONTACT

[email protected]

2675869977

Joshua Brandstadter, MD, PhD, MSc

CONTACT

[email protected]

267-847-8220

Sponsors and collaborators

Lead sponsor

University of Pennsylvania

Other

Collaborators

  • Castleman Disease Collaborative Network
  • EUSA Pharma, Inc.

Registry information

Official study title

ACCELERATE (Advancing Castleman Care With an Electronic Longitudinal Registry, E-Repository, And Treatment/Effectiveness Research): An International Registry for Patients With Castleman Disease

Acronym: ACCELERATE

Important dates

Study start
2016
Primary completion
2027
Study completion
2027
First posted
Jun 29, 2016
Registry last updated
Mar 3, 2026

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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