International Registry for Patients With Castleman Disease
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.
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:

 1. 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,

 2. 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

 3. 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.