International Registry for Patients With Castleman 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.