Patient-Powered ACCELERATE Registry Raises Castleman Disease Awareness

Sometimes it can be difficult to study or learn about rare diseases, especially when there are not many patients. For example, only an estimated 30,000 Americans have Castleman disease. Yet researchers from the Perelman School of Medicine at the University of Pennsylvania have found a unique way to improve their research capabilities and raise awareness for this condition. According to a Penn Medicine news release, the ACCELERATE registry is designed to collect patient data straight from the source. Learn more about this registry in a paper published in Cell Reports Medicine.


Both Janssen Pharmaceuticals and EUSA Pharma funded the ACCELERATE registry. Patients with Castleman disease can directly enroll into the registry, offering patient-reported data and research insights. Researchers determined that by allowing patients to enroll and engage directly, it increased both enrollment and data availability. In addition to tracking disease progression or symptoms, the registry also offers opportunities for patients to enroll in clinical trials.

The registry also consists of two arms: one which is patient-powered and the other which is doctor-directed. This decision followed the 2016 approval of siltuximab, a monoclonal antibody approved for the treatment of some types of Castleman disease. Unfortunately, the drug is not effective in many patients. The doctor-directed arm helped to collect data and tissue samples from patients. However, the patient-powered arm was extremely effective, enrolling over 250 patients by the end of 2019. In comparison, the other arm had recruited less than 100 patients. Within the patient-powered group, researchers collected 683 clinical, imaging, and lab-related data. Ultimately, the registry achieved its 5-year enrollment goal within just a 2-year timeframe.

Castleman Disease

Also known as Castleman’s disease, Castleman tumor, or giant lymph node hyperplasia, Castleman disease is a rare disorder causing abnormal cell growth. This condition can either be unicentric, in which one solid tumor grows in a lymph node, or multicentric, in which these non-cancerous tumors are widespread. Generally, multicentric Castleman disease is considered to be more lethal. Doctors are not sure what causes this disorder, though excess interleukin-6 (IL-6) production is believed to play a role. Normally, IL-6 plays a role in immune response. Others speculate that human herpesvirus 8 (HHV-8) may play a role in disease development, considering an estimated 50% of all patients with Castleman also have HHV-8. However, none of this is conclusive. It can affect those of all backgrounds, though it is less likely in children.

Typically, patients with the unicentric form are asymptomatic. In this form of the disorder, lymph nodes are usually localized to the chest, neck, and abdomen. Symptoms that do appear may include:

  • Unintended weight loss
  • Groin, neck, or underarm lumps
  • Chest or stomach pressure

Alternately, multicentric Castleman disease is usually symptomatic. Symptoms include:

  • Unintended weight loss
  • Chest or stomach pressure
  • Spleen and liver enlargement
  • Nerve damage
  • Night sweats
  • Fever
  • Muscle weakness
  • Lumps around the lymph nodes
  • Skin rashes
  • Organ dysfunction

Learn more about Castleman disease.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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