Registry for rare histiocytic disorders

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

The International Rare Histiocytic Disorders Registry (IRHDR) aims to collect and analyze clinical, epidemiological, treatment, and survival data for patients diagnosed with rare histiocytic disorders. This observational registry will facilitate uniform diagnosis and provide a framework for future therapeutic recommendations. It includes patients of any age with a confirmed diagnosis of a rare histiocytic disorder, allowing for the inclusion of historical cases dating back to 1995. The registry will also offer expert pathology reviews to enhance understanding and management of these conditions.

Why it matters

Who can join: the full rules

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.

Where it's running

• The University of Alabama at Birmingham
  Birmingham, Alabama, United States Recruiting
• Children's Hospital of Los Angeles
  Los Angeles, California, United States Recruiting
• Valley Children's Hospital
  Madera, California, United States Recruiting
• Dana-Farber Cancer Institute
  Boston, Massachusetts, United States Recruiting
• Memorial Sloan Kettering Cancer Center
  New York, New York, United States Recruiting
• University of Pittsburgh Medical Center
  Pittsburgh, Pennsylvania, United States Recruiting

Study contacts

• Principal investigator: Oussama Abla, MD — The Hospital for Sick Children
• Study coordinator: Oussama Abla, MD
• Email: oussama.abla@sickkids.ca
• Phone: 416-813-7879

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.