Actively Recruiting
International Rare Histiocytic Disorders Registry (IRHDR)
Led by The Hospital for Sick Children · Updated on 2025-06-24
400
Participants Needed
15
Research Sites
726 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
International Rare Histiocytic Disorders Registry (IRHDR)
Who Can Participate
Eligibility Criteria
You may qualify if you...
- 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 and prospectively.
- Signed informed consent by the patient, or parent/legal guardian.
- Cognitively impaired patients can be included with consent by legal guardian/parent.
- Deceased patients can be included if contacted at least 6 months after death and not on child's birthday or death anniversary.
You will not qualify if you...
- Informed consent has not been signed.
- Diagnosis other than rare histiocytic disorder.
- Cases diagnosed before the year 1995.
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 15 locations
1
The University of Alabama at Birmingham
Birmingham, Alabama, United States
Actively Recruiting
2
Children's Hospital of Los Angeles
Los Angeles, California, United States, 90027
Actively Recruiting
3
Valley Children's Hospital
Madera, California, United States, 93636
Actively Recruiting
4
Dana-Farber Cancer Institute
Boston, Massachusetts, United States, 02215
Actively Recruiting
5
Memorial Sloan Kettering Cancer Center
New York, New York, United States, 10022
Actively Recruiting
6
University of Pittsburgh Medical Center
Pittsburgh, Pennsylvania, United States, 15219
Actively Recruiting
7
Hospital Nacional de Pediatria Garrahan
Buenos Aires, Argentina
Actively Recruiting
8
The Hospital for Sick Children
Toronto, Ontario, Canada, M5G 1X8
Actively Recruiting
9
Centre hospitalier universitaire Sainte-Justine
Montreal, Quebec, Canada, H3T 1C5
Active, Not Recruiting
10
University Hospital Brno
Brno, Czechia
Actively Recruiting
11
Rostock University Medical Hospital
Rostock, Germany
Actively Recruiting
12
Azienda Ospedaliero-Universitaria Meyer
Florence, Italy
Actively Recruiting
13
Prinses Maxima Center
Utrecht, CS, Netherlands, 3584
Actively Recruiting
14
Children's Memorial Health Institute
Warsaw, Poland
Actively Recruiting
15
Hospital Universitario Cruces
Barakaldo, Spain
Actively Recruiting
Research Team
O
Oussama Abla, MD
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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