Status:
RECRUITING
International Rare Histiocytic Disorders Registry (IRHDR)
Lead Sponsor:
The Hospital for Sick Children
Conditions:
Rare Histiocytic Disorders (RHDs)
Erdheim-Chester Disease (ECD)
Eligibility:
All Genders
Brief 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 progress...
Detailed Description
Histiocytoses are rare diseases caused by an excess of cells called Histiocytes, which can infiltrate the skin, bones, lungs, liver, spleen and the central nervous system. These disorders can range fr...
Eligibility Criteria
Inclusion
- 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.
Exclusion
- Informed consent has not been signed.
- Diagnosis other than RHD.
- Cases diagnosed before the year 1995.
Key Trial Info
Start Date :
October 1 2014
Trial Type :
OBSERVATIONAL
Allocation :
ESTIMATED
End Date :
September 1 2028
Estimated Enrollment :
400 Patients enrolled
Trial Details
Trial ID
NCT02285582
Start Date
October 1 2014
End Date
September 1 2028
Last Update
June 24 2025
Active Locations (15)
Enter a location and click search to find clinical trials sorted by distance.
1
The University of Alabama at Birmingham
Birmingham, Alabama, United States
2
Children's Hospital of Los Angeles
Los Angeles, California, United States, 90027
3
Valley Children's Hospital
Madera, California, United States, 93636
4
Dana-Farber Cancer Institute
Boston, Massachusetts, United States, 02215