International Registry for Patients With Castleman Disease (ACCELERATE)
Castleman Disease / Posted 1 year ago
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 500 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. The patient registry will have two methods of entry. Patients located in the following countries (Germany, France, Italy, UK, or Spain) are recommended to contact the specific investigators at the sites listed below via the “physician-directed arm.” Participating physicians will consent and enroll patients, enter their medical record data into the registry, and update medical records periodically.
Patients located anywhere in the United States of America (USA), Canada, or rest of world (except for patients in select countries in the EU listed below) will be able to enroll themselves directly into the registry via the “patient-powered arm.” Participants in the patient-powered arm will enroll online and be asked to provide their electronic medical records to University of Pennsylvania researchers for data extraction. All patients in both groups 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.
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.
- Study start date : October 2016
- Study end date : September 2023
- Wales-Based Study Contact : Please speak to your clinician
- Principal Investigator : Matthew Streetly, FRCPath, MD (King's College Hospital)