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Study identifier: NCT02285582 Synced from ClinicalTrials.gov · July 28, 2026
● Recruiting

International Rare Histiocytic Disorders Registry (IRHDR)

Condition: Rare Histiocytic Disorders (RHDs) · Erdheim-Chester Disease (ECD) · Rosai-Dorfman Disease (RDD)  ·  Sponsor: The Hospital for Sick Children

PhaseN/A
Planned participants400
Who can joinAll sexes, N/A to no upper limit
Healthy volunteersNo

About this study

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.

This description comes directly from the study's public registry record.

Talk to the study team

Oussama Abla, MD  ·  416-813-7879  ·  oussama.abla@sickkids.ca

Always discuss trial participation with your own doctor first.

Locations (15)

The University of Alabama at BirminghamBirmingham, Alabama, United StatesRecruiting
Children's Hospital of Los AngelesLos Angeles, California, United StatesRecruiting
Valley Children's HospitalMadera, California, United StatesRecruiting
Dana-Farber Cancer InstituteBoston, Massachusetts, United StatesRecruiting
Memorial Sloan Kettering Cancer CenterNew York, New York, United StatesRecruiting
University of Pittsburgh Medical CenterPittsburgh, Pennsylvania, United StatesRecruiting
Hospital Nacional de Pediatria GarrahanBuenos Aires, ArgentinaRecruiting
The Hospital for Sick ChildrenToronto, Ontario, CanadaRecruiting
Centre hospitalier universitaire Sainte-JustineMontreal, Quebec, CanadaActive Not Recruiting
University Hospital BrnoBrno, CzechiaRecruiting
Rostock University Medical HospitalRostock, GermanyRecruiting
Azienda Ospedaliero-Universitaria MeyerFlorence, ItalyRecruiting

+ 3 more locations — full list on the registry record.

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Source record: clinicaltrials.gov/study/NCT02285582