Study Objective: The creation of an International Rare Histiocytic Disorders Registry (IRHDR) will facilitate a uniform diagnosis of the RHD’s, as well as the collection and analysis of the clinical, epidemiological, treatment and survival data of patients with RHD. The registry will also provide expert pathology reviews and may lead to future therapeutic recommendations. Furthermore, the IRHDR can provide a framework for future clinical trials, thus, creating excellent research opportunities. Lastly, a de-identified link between clinical data and companion biology studies can potentially be accomplished in the future through the IRHDR. This may further help in understanding the etiology of these rare diseases, as well as identifying potential therapeutic targets.
Principal Investigator: OussamaAbla, MD, 416-813-7879, [email protected] – OR – Prerna Chopra, 416-813-7654 ext 202043, [email protected]
Requested Patient Involvement: Any patient diagnosed with ECD (living or deceased) can be included in this trial if there is a suitable pathology sample available for central review.
ClinicalTrials.gov Identifier: NCT02285582