The Histiocytosis Association of America has created the Erdheim-Chester Disease (ECD) Registry to ease the difficulty in the diagnosis and treatment of ECD. This endeavor was made possible through the generosity of a private donation.
Information regarding diagnosis, treatment, and recovery will be collected via the ECD Registry Data Collection Questionnaire. The Questionnaire will be distributed to both patients and physicians. Patients are encouraged to complete the Questionnaire with their physician in order to insure the accuracy of data collected for the Registry.
This information will be submitted to and compiled at the
Data will be analyzed by the ECD Registry Project Director, Dr. Kenneth McClain of Texas Children’s
The ECD Registry will act as a model for future registries focusing on histiocytic disorders such as Langerhans cell histiocytosis, Rosai-Dorfman Disease, Juvenile Xanthogranuloma, and/or hemophagocytic syndromes.
The Histiocytosis Association of America is optimistic that the information gathered by the ECD Registry will contribute to the future care of patients diagnosed with ECD and we look forward to making strides in raising awareness of Erdheim-Chester Disease.
The ECD Registry Data Collection Questionnaire is not currently available. At the request of our members with ECD, their caretakers and physicians treating this disease, the Histiocytosis Association of America and the Histiocyte Society are condensing the questionnaire and making it available to complete online.
When the improvements are complete, the online ECD questionnaire will be emailed to every member who joined the HAA in search of information on ECD.
For more information please contact:
Histiocytosis Association of Christine Toughill, Outreach Coordinator 332 North Broadway Phone: +1 856 589 6606 Fax: +1 856 589 6614 Email: christinetoughill@histio.org
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