Join the Registry

ACCELERATE Natural History Study

ACCELERATE is the first-ever registry for Castleman disease patients. It’s a research study designed to help physicians and researchers better understand Castleman disease, uncover patterns in the disease, and improve treatment.

Help us learn more about Castleman disease.

Enroll in the ACCELERATE registry to donate your medical records to Castleman disease research.

 

What is the ACCELERATE Natural History Study?

The ACCELERATE registry is a research study and the first-ever global patient registry for Castleman disease. The goal of the registry is to combine medical data from hundreds of patients with Castleman disease so that researchers can discover patterns and clues that may help physicians better understand and treat Castleman disease. Patients from around the world can enroll online. Once enrolled, medical data is collected, de-identified to protect patient confidentiality, and entered into a database by the team at the University of Pennsylvania. Participation in the ACCELERATE registry is entirely voluntary. We hope that the registry will provide insights about Castleman disease and its possible treatments so that medical care of Castleman disease patients will be improved in the future.

How do I enroll into the ACCELERATE registry and donate my medical records to research?

Patients with Castleman disease and parents of children with Castleman disease can enroll here! Participation in the ACCELERATE registry is entirely voluntary. To be eligible for enrollment, patients must have had a pathology report suggest or mention “Castleman disease” and must sign an informed consent form online. Enrollment can be completed online in about 20-30 minutes at the link here. If preferred, patients can also enroll in the registry by telephone by calling 215-349-5713. Family members of deceased patients are also able to enroll into the registry. 

If you have completed the ACCELERATE registration process and want to share feedback with us, please fill out this brief survey.

Why should I enroll?

Over the years, many patients and their loved ones have shared their Castleman disease stories with the CDCN and, through this and other research, we have come to learn that Castleman disease affects individual patients in a large variety of ways. Castleman disease treatments seem to also affect individual patients in different ways. The large amount of variety makes Castleman disease particularly difficult to learn about and treat.

When a large number of patients enroll in ACCELERATE and donate their de-identified medical records, there is a greater chance that more information about Castleman disease can be learned, physicians may be better equipped to provide effective treatment for their patients, and more progress can be made toward improving the lives of future patients with Castleman disease.

We recognize that sharing your health information can be a difficult choice, and we want you to feel comfortable with your decision to enroll in the ACCELERATE registry. Participation in the ACCELERATE registry is completely voluntary. Please take a look at our FAQ section or email ACCELERATE for more information.

I am a loved one of a Castleman disease patient. Can I enroll on their behalf?

If you are a parent of a pediatric Castleman disease patient, you are able to enroll your child into the registry. Children over the age of 7 and younger than 18 have a special consent process as part of their enrollment. In addition, family members of deceased patients with Castleman disease are also able to enroll and have their medical records entered into the ACCELERATE registry.

I still have questions. Where can I find answers?

More information about the ACCELERATE registry, including Frequently Asked Questions, can be found here.

If you would like to speak to an ACCELERATE Patient Ambassador prior to registration, please contact Mileva at mileva@castlemannetwork.org

If you have any additional questions please email accelerate@uphs.upenn.edu or call 215-349-5713.

“Castleman disease is so unknown. People don’t know about it. Doctors don’t know about it. When my daughter Katie was diagnosed before her 2nd birthday, we were handed a google document saying "this is what it is." Since Katie was diagnosed, the CDCN has made incredible progress towards finding a cure. We now have a better grasp on Castleman disease than that google document. By enrolling Katie in ACCELERATE, I know that we are helping to find her cure, a cure I am hopeful we will see in her lifetime. ”
Mileva Repasky Mom of a Castleman disease patient, Chief Patient and Development Officer
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