International Rare Histiocytic Disorders Registry (IRHDR)

Launched by THE HOSPITAL FOR SICK CHILDREN · Nov 4, 2014

Keywords

ClinConnect Summary

The International Rare Histiocytic Disorders Registry (IRHDR) is a clinical trial aimed at understanding rare histiocytic disorders (RHDs), which are conditions where certain immune cells called histiocytes grow in different parts of the body. These disorders can vary widely; some might resolve on their own, while others can become serious and life-threatening. The trial is important because it seeks to gather information about the causes, treatments, and outcomes of these rare conditions, which are not well understood due to their rarity. By creating a registry, researchers hope to develop better treatment recommendations and pave the way for future clinical trials.

If you or a loved one has been diagnosed with a rare histiocytic disorder at any time since January 1995, you may be eligible to participate in this study. Participants of all ages can join, and consent must be provided by the patient or their parent/legal guardian. Those who join the registry can expect to share information about their diagnosis and treatment, which will help researchers gain insights into these disorders. It's important to note that the study is currently recruiting participants, so if you're interested, you can look into how to get involved!

Gender

ALL

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.