Registry collecting data on rare histiocytic disorders and their treatment
Collects information on people with rare immune-cell disorders such as Erdheim-Chester disease.
Key facts
- Who runs it
- The Hospital for Sick Children
- Where
- Montreal and Toronto, CanadaSee the 2 sitesAlso in 8 other countries, 13 sites
- Trial code
- Registry title
- International Rare Histiocytic Disorders Registry (IRHDR)
- Status
- Recruiting
- People taking part
- 400 people, planned
- Started
- Oct 2014
- Expected to end
- Sept 2028
- Type of study
- Observational
- Treatments tested
- Registry study
- Record updated
- 24 June 2025
Who can take part
AI summary
From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.
The registry is looking for people of any age who have a rare histiocytic disorder, diagnosed in 1995 or later, and who have signed consent.
- Age
- Any age at diagnosis.
- Sex
- All sexes can join.
- Disease stage
- A diagnosed rare histiocytic disorder, diagnosed from January 1, 1995 onward.
Main reasons for not taking part
- Consent form not signed
- A diagnosis other than a rare histiocytic disorder
- Diagnosed before 1995
The registry criteria, word for word
Show all 9 criteriaShow less
Who can take part
- Any age at diagnosis
- Diagnosis of a rare histiocytic disorder, established before or after the opening of the registry
- Cases diagnosed from January - 01- 1995 until the present time and prospectively
- Signed informed consent by a patient, or parent/legal guardian
- Cognitively impaired patients can be included after consent by legal guardian/parent
- Deceased patients can be included if they are contacted at least 6 months after the death of their child and not on their child's birthday or anniversary of death
Who cannot take part
- Informed consent has not been signed
- Diagnosis other than RHD
- Cases diagnosed before the year 1995
Where in Canada
Also in 8 other countries, 13 sites
- Centre Hospitalier Universitaire Sainte-JustineMontreal, CanadaContact: Oussama Abla, MDNo longer taking part
- The Hospital for Sick ChildrenToronto, CanadaContact: Oussama Abla, MDTaking people
About the trial
What the trial wants to find out
The rare histiocytic disorders (RHDs) are characterized by the infiltration of one or more organs by non-LCH histiocytes. They can range from localized disease that resolves spontaneously, to progressive disseminated forms that can be sometimes life-threatening. Since they are extremely rare, there is limited understanding of their causes and best treatment options. Physicians, patients and parents of children with RHDs frequently consult members of the Histiocyte Society regarding the best management of these disorders. Very often, no specific recommendation can be made due to the lack of prospective outcome data, or even large retrospective case series. The creation of an international rare histiocytic disorders registry (IRHDR) could facilitate a uniform diagnosis of the RHDs, as well as the collection and analysis of the clinical, epidemiological, treatment and survival data of patients with RHD. The registry may also lead to future therapeutic recommendations, provide a framework for future clinical trials and create excellent research opportunities.
Treatments tested
- Registry study
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorData and sources
- Registry record
- Listed on ClinicalTrials.gov.
- Official title
- International Rare Histiocytic Disorders Registry (IRHDR)
- Plain-language title
- Registry collecting data on rare histiocytic disorders and their treatmentGenerated from the registry record. The registry title is the official one.
- AI summary
- From the trial's eligibility criteria. Read by machine on 12 November 2026.
- Record updated
- 24 June 2025