Castleman Disease
Plain English clinical trial information, updated daily from ClinicalTrials.gov and public government registries. Not medical advice.
How these figures are counted
- Trials on record is every trial tagged to this condition at any stage, except those withdrawn before starting or terminated early. Most are completed rather than ongoing, so this is a measure of research history, not of current activity. It is also smaller than the sitewide "trials tracked" figure, which does include withdrawn and terminated trials.
- Recruiting now counts only trials whose registry status is "Recruiting". Trials listed as not yet recruiting or enrolling by invitation are excluded, so this understates how many may open to new participants soon.
- Australian sites counts trials counted under "Recruiting now" that list at least one Australian site. A site being listed does not mean it is currently enrolling, and Australian trials registered only on ANZCTR are not counted yet, so this understates local availability.
- Phase 3 trials counts trials counted under "Recruiting now" that are at Phase 3.
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Understanding Castleman Disease
Castleman Disease is a rare condition that affects the lymph nodes – the small glands found throughout your body that are part of your immune system. Unlike some other lymph node conditions, Castleman Disease is not a cancer, though it can sometimes behave in ways that feel similar. It causes one or more lymph nodes to become enlarged and can trigger the immune system to become overactive, which may lead to a range of symptoms including fatigue, fever, night sweats, and weight loss. There are different forms of the condition: one type affects a single lymph node (called unicentric), while another affects multiple lymph nodes and organs across the body (called multicentric).
Castleman Disease is considered rare in Australia, with only a small number of people diagnosed each year. It can affect people of any age, though the multicentric form tends to be more common in adults. Because it is uncommon, many Australians with this diagnosis will be referred to specialists – often haematologists or oncologists – who have experience managing complex lymph node conditions. Being seen at a larger hospital or centre with specialist expertise can make a difference in getting an accurate diagnosis and a clear picture of which type you have.
Treatment varies depending on which form of the disease a person has. For the unicentric type, surgical removal of the affected lymph node is often very effective. The multicentric form is generally more complex to manage and may involve medications that target the immune system or specific proteins driving the overactivity. Research into this condition is ongoing, and treatment approaches have improved in recent years. Your medical team is the best source of information about what options are most appropriate for your individual situation.
This overview is an AI generated summary written from public medical sources and checked on a sample basis. It is general information, not medical advice or a diagnosis. Always speak with your doctor about your situation. How we use AI
Can you access treatment for Castleman Disease in Australia right now? Here's what's publicly known.
- 1 PBS-subsidised medicine is mapped to Castleman Disease on the Pharmaceutical Benefits Scheme, listed below. Your doctor can advise whether a PBS-subsidised option is appropriate for you.
- No trials currently recruiting at Australian sites right now. Worldwide trials may still be an option. See the trial list below.
Information on this site does not constitute medical advice. Data is sourced from publicly available government registries. Always consult your doctor before making any health decisions. Trial status should be verified directly with the trial site.
PBS-subsidised medicines for Castleman Disease
1 medicine listed on the PBS for Castleman Disease. Filter by authority type, or open the full table below.
Full PBS medicines table 1 listed
These medicines are listed on the Pharmaceutical Benefits Scheme (PBS) for the specific indications shown. A listing does not mean a medicine is right for you; your doctor decides what is appropriate. Prices shown are the PBS-determined dispensed price. Most patients pay only the standard co-payment, up to AU$25.00 per script (general) or AU$7.70 (concession or Safety Net) in 2026, with the Australian Government subsidising the rest.
| Medicine | Brand(s) | Listed for | ||
|---|---|---|---|---|
| Siltuximab | Sylvant | Idiopathic multicentric Castleman disease (iMCD) | AU$779.28 |
Source: Pharmaceutical Benefits Scheme (PBS), © Commonwealth of Australia. Data used and redistributed under permission; not modified from its original wording where displayed verbatim.
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Become a founding memberResearch pipeline
Where trials for Castleman Disease currently sit in the development pipeline. The funnel shape shows how few drugs reach later phases in general; the counts are this condition's actual trial numbers.
Most active research sponsors
Organisations with the most recruiting trials for Castleman Disease.
Where trials are running
Clinical trial sites for Castleman Disease by country. Australia is highlighted.
Clinical trials for Castleman Disease
Showing 14 of 14 trials
The plain English eligibility text on each trial below is an AI generated summary of the official criteria, checked on a sample basis. How we use AI
🇦🇺 NCT01024036 · Janssen Research & Development, LLC Phase 2 · 23 countries
Who might be able to join this trial: - You have been diagnosed with Multicentric Castleman's Disease that is measurable and causing symptoms - Your heart, liver, kidneys, and other organs are functioning well enough, based on blood tests reviewed by the study doctor - You are fairly active and able to carry out daily...
NCT04585893 · UNC Lineberger Comprehensive Cancer Center Phase 2 · 1 country
**Who might be able to join this trial:** - You have been newly diagnosed or previously treated for a condition called KSHV-associated Multicentric Castleman Disease (MCD), confirmed by a tissue biopsy showing specific features under a microscope. - You are 18 years old or older at the time of signing the consent form...
NCT01400503 · Janssen Research & Development, LLC Phase 2 · 17 countries
**Who might be able to join this trial:** - You have been diagnosed with multicentric Castleman's disease (a rare condition affecting the lymph nodes) - You previously took part in one of two specific earlier studies (called C0328T03 or CNTO328MCD2001), in either the treatment or comparison group - Your last dose of st...
NCT00006518 · National Cancer Institute (NCI) Not Applicable · 1 country
Who might be able to join this trial: - You must be 18 years old or older. - You must be well enough to carry out some daily activities — your overall health level is measured on a standard scale, and you need to meet a minimum threshold (confirm with trial site). - You must meet at least one of the following condition...
NCT02817997 · University of Pennsylvania Not Applicable · 1 country
"Who might be able to join this trial: - People of any age may be eligible to join. - You must have a pathology report (a lab report from a tissue sample) that suggests a diagnosis of Castleman disease, and this report must be able to be uploaded electronically — the disease must not be limited to the skin only. - You...
NCT03300830 · National Cancer Institute (NCI) Not Applicable · 1 country
**Who might be able to join this trial:** - You are 18 years of age or older - You have HIV or another condition that weakens the immune system, along with cancer - You have a type of cancer that is thought to be caused by a virus - You are HIV-negative but have a type of cancer that commonly occurs in people who have...
NCT03717844 · UNC Lineberger Comprehensive Cancer Center Not Applicable · 1 country
**Who might be able to join this trial:** - You have an appointment or are staying as a patient at UNC Cancer Hospitals, an affiliated clinic, or one of the participating locations for the assessment or treatment of a plasma cell disorder. - You have been diagnosed with a plasma cell disorder, which means a condition w...
NCT04968288 · National Cancer Institute (NCI) Not Applicable · 1 country
Who might be able to join this trial: - You have been diagnosed with KSHV-associated Multicentric Castleman Disease (a rare condition linked to a specific virus), confirmed by a tissue sample test done at a specific laboratory at the National Cancer Institute - You are 18 years old or older - You are well enough to car...
NCT05283993 · Peking University First Hospital Not Applicable · 1 country
**Who might be able to join this trial:** - You have been diagnosed with a plasma cell disorder — this is a group of conditions where abnormal plasma cells (a type of blood cell) cause problems in the body. Examples include multiple myeloma, amyloidosis, or related conditions (confirm with trial site for the full list...
NCT05663502 · AIDS Malignancy Consortium Not Applicable · 1 country
**Who might be able to join this trial:** - You must be at least 18 years old. - You must be HIV-positive with a diagnosed cancer, OR if you are HIV-negative, you must have a newly diagnosed or returning cancer that is scientifically linked to cancers associated with AIDS, such as: classic or transplant-related Kaposi...
NCT05907759 · National Cancer Institute (NCI) Phase 2 · 1 country
**Who might be able to join this trial:** - People who have been diagnosed (confirmed by tissue testing) with primary effusion lymphoma (PEL), plasmablastic lymphoma (PBL), or a related condition called KSHV-associated multicentric Castleman disease (MCD), where the disease has come back or stopped responding to treat...
NCT06052618 · National Cancer Institute (NCI) Phase 2 · 1 country
**Who might be able to join this trial:** - You have been diagnosed with KSHV-associated Inflammatory Cytokine Syndrome (KICS) or a condition called KSHV-related Multicentric Castleman Disease (KSHV-MCD), confirmed by a specialist laboratory - You are 18 years of age or older - You have at least one ongoing symptom li...
NCT06720870 · IRCCS Azienda Ospedaliero-Universitaria di Bologna Not Applicable · 1 country
Who might be able to join this trial: - You have been diagnosed with a specific condition called Multicentric Castleman Disease (MCD) that has returned or did not respond to treatment, and you tested negative for both HIV and a virus called HHV-8 (confirm with trial site) - You received a medication called siltuximab a...
NCT07085039 · University of Pennsylvania Phase 2 · 1 country
**Who might be able to join this trial:** - You are between 18 and 80 years old (male or female) - You have been diagnosed with a condition called iMCD (idiopathic multicentric Castleman disease), confirmed by a specialist or through a related registry study - Your iMCD has not responded well enough to a type of treat...
Advocacy and support in Australia
Organisations that can offer information, support, or connection for Castleman Disease. Where more than one is listed, they serve different needs or regions, so choose whichever fits your situation.
There isn't a dedicated Australian group for Castleman disease specifically. Rare Voices Australia is the best starting point for broader rare disease support.
This is a starting point, not medical advice or an endorsement. Contact details change; search the organisation name to find its current website.