NCT02285582 International Rare Histiocytic Disorders Registry (IRHDR)
| NCT ID | NCT02285582 |
| Status | Recruiting |
| Phase | — |
| Sponsor | The Hospital for Sick Children |
| Condition | Rare Histiocytic Disorders (RHDs) |
| Study Type | OBSERVATIONAL |
| Enrollment | 400 participants |
| Start Date | 2014-10 |
| Primary Completion | 2028-09 |
Eligibility & Interventions
Eligibility Fast-Check
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What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 400 participants in total. It began in 2014-10 with a primary completion date of 2028-09.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
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 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 Criteria
Inclusion Criteria: 1. Any age at diagnosis. 2. Diagnosis of a rare histiocytic disorder, established before or after the opening of the registry. 3. Cases diagnosed from January - 01- 1995 until the present time and prospectively. 4. Signed informed consent by a patient, or parent/legal guardian. 5. Cognitively impaired patients can be included after consent by legal guardian/parent. 6. 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 Criteria: 1. Informed consent has not been signed. 2. Diagnosis other than RHD. 3. Cases diagnosed before the year 1995.
Contact & Investigator
Oussama Abla, MD
PRINCIPAL INVESTIGATOR
The Hospital for Sick Children
Frequently Asked Questions
Who can join the NCT02285582 clinical trial?
This trial is open to participants of all sexes, studying Rare Histiocytic Disorders (RHDs). Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT02285582 currently recruiting?
Yes, NCT02285582 is actively recruiting participants. Contact the research team at oussama.abla@sickkids.ca for enrollment information.
Where is the NCT02285582 trial being conducted?
This trial is being conducted at Birmingham, United States, Los Angeles, United States, Madera, United States, Boston, United States and 11 additional locations.
Who is sponsoring the NCT02285582 clinical trial?
NCT02285582 is sponsored by The Hospital for Sick Children. The principal investigator is Oussama Abla, MD at The Hospital for Sick Children. The trial plans to enroll 400 participants.