An Observational Study on Erdheim-Chester Disease (ECD)
This study is looking to better understand Erdheim-Chester Disease (ECD), a rare condition where certain immune cells (histiocytes) build up in different parts of the body. Researchers want to see how different features of ECD, like which clinical group you belong to or how much organ damage you have, are connected to how long people live with the disease. They will be looking at information from 1000 people with ECD, including their clinical details, genetic changes (like in the AKT, MTOR, PI3K, and RAF pathways), and how they responded to treatments. To join, you need to have a confirmed ECD diagnosis, and your medical information must be available for at least one year of follow-up. This study is observational, meaning it collects information without testing new treatments.
- Study design
- This is an observational study, meaning researchers will collect and analyze existing medical information from 1000 participants with Erdheim-Chester Disease. It is not testing a new drug or treatment.
- What's involved
- Not specified in the trial record.
- Compensation
- Not stated in the trial record.
- Follow-up
- The study will track participants' overall survival for 5 years to see how it relates to their clinical features and organ damage.
AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.
ECD-Score: a Study on Erdheim-Chester Disease
At a glance
Conditions
NCT07454343
Where you'd take part
This study runs at 7 sites. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.
Meyer Children's Hospital IRCCS, Firenze
Florence, Fi, Italystudy coordinator listed
Recruiting
Hopital Pitiè-Salpetriere
Paris, Franceno site contact published
Not yet recruiting
Mayo Clinic
Rochester, Minnesotano site contact published
Not yet recruiting
Memorial Sloan Kettering Cancer Center
New York, New Yorkno site contact published
Not yet recruiting
National Institute of Health
Bethesda, Marylandno site contact published
Not yet recruiting
Newcastle Upon Tyne Hospitals NHS Foundation Trust
Newcastle, Newcastel, United Kingdomno site contact published
Not yet recruiting
San Raffaele Hospital
Milan, Italy, Italyno site contact published
Not yet recruiting
Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.
Study leadership
- Augusto Vaglio, Medical Doctor · PRINCIPAL_INVESTIGATOR · Meyer Children's Hospital IRCCS
Who to contact
Opens a ready-to-send draft in your own email app — review before sending.
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Inclusion
Exclusion
What this trial measures
- Overall survival5 years
The time from the patient's enrollment in the study until death or the last available follow-up
- Association between belonging to a clinical cluster and survival5 years
Clinical cluster of ECD
- Association between organ damage and survival5 years
organ damage related to the disease (e.g., chronic kidney failure)
- Association between the treatment used (relative to the historical period) and survival5 years
treatment received
- Association between response to treatment and survival5 years
complete response rate, partial response, stable disease, progression
- Association between treatment toxicity and survival5 years
incidence and severity of adverse events (classified according to CTCAE v6.0)
- Association between comorbidities and survival5 years
presence of malignant tumors and other chronic diseases
- Association between geographical origin and survivalat enrollment
geographical origin