International Rare Histiocytic Disorders Registry (IRHDR)

Status: Recruiting
Location: See all (14) locations...
Intervention Type: Other
Study Type: Observational
SUMMARY

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.

Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:

• 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.

Locations
United States
Alabama
The University of Alabama at Birmingham
RECRUITING
Birmingham
California
Children's Hospital of Los Angeles
RECRUITING
Los Angeles
Valley Children's Hospital
RECRUITING
Madera
Massachusetts
Dana-Farber Cancer Institute
RECRUITING
Boston
New York
Memorial Sloan Kettering Cancer Center
RECRUITING
New York
Pennsylvania
University of Pittsburgh Medical Center
RECRUITING
Pittsburgh
Other Locations
Argentina
Hospital Nacional de Pediatria Garrahan
RECRUITING
Buenos Aires
Canada
Centre hospitalier universitaire Sainte-Justine
ACTIVE_NOT_RECRUITING
Montreal
The Hospital for Sick Children
RECRUITING
Toronto
Germany
Rostock University Medical Hospital
RECRUITING
Rostock
Italy
Azienda Ospedaliero-Universitaria Meyer
RECRUITING
Florence
Netherlands
Prinses Maxima Center
RECRUITING
Utrecht
Poland
Children's Memorial Health Institute
RECRUITING
Warsaw
Spain
Hospital Universitario Cruces
RECRUITING
Barakaldo
Contact Information
Primary
Oussama Abla, MD
oussama.abla@sickkids.ca
416-813-7879
Time Frame
Start Date: 2014-10
Estimated Completion Date: 2028-09
Participants
Target number of participants: 400
Sponsors
Leads: The Hospital for Sick Children

This content was sourced from clinicaltrials.gov

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