Registry for Patients with Castleman Disease
ACCELERATE (Advancing Castleman Care With an Electronic Longitudinal Registry, E-Repository, And Treatment/Effectiveness Research): An International Registry for Patients With Castleman Disease
University of Pennsylvania · NCT02817997
This study is collecting information from people with Castleman disease to help improve understanding and treatment of the condition.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 1000 (estimated) |
| Sex | All |
| Sponsor | University of Pennsylvania (other) |
| Locations | 1 site (Philadelphia, Pennsylvania) |
| Trial ID | NCT02817997 on ClinicalTrials.gov |
What this trial studies
This registry collects clinical, laboratory, and patient survey data from individuals diagnosed with Castleman disease to enhance understanding, diagnosis, and treatment of the condition. Supported by the Castleman Disease Collaborative Network, the registry aims to gather real-world data from 1000 patients globally, focusing on demographic, clinical, and treatment information. The data collected will facilitate future research studies and improve collaboration among patients, healthcare providers, and researchers.
Who should consider this trial
Good fit: Ideal candidates include individuals of any age with a pathology report suggesting Castleman disease.
Not a fit: Patients without a confirmed diagnosis of Castleman disease or those unable to provide informed consent may not benefit from this registry.
Why it matters
Potential benefit: If successful, this registry could lead to improved diagnosis and treatment options for patients with Castleman disease.
How similar studies have performed: Other patient registries have successfully contributed to advancements in understanding rare diseases, indicating potential for success in this approach.
Eligibility criteria
Show full inclusion / exclusion criteria
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.
Where this trial is running
Philadelphia, Pennsylvania
- University of Pennsylvania — Philadelphia, Pennsylvania, United States (RECRUITING)
Study contacts
- Principal investigator: Joshua Brandstadter, MD, PhD, MSc — University of Pennsylvania
- Study coordinator: Joshua Brandstadter, MD, PhD, MSc
- Email: joshua.brandstadter@pennmedicine.upenn.edu
- Phone: 267-847-8220
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.
Conditions: Castleman Disease, Castleman's Disease, Giant Lymph Node Hyperplasia, Angiofollicular Lymph Hyperplasia, Angiofollicular Lymph Node Hyperplasia, Angiofollicular Lymphoid Hyperplasia, GLNH, Hyperplasia, Giant Lymph Node