The following link is to the protocol for an ECD study as announced by Dr. Augusto Vaglio of the University of Parma in Italy. ECD patients are invited to participate by sending in medical records. The study aims to gather medical records for 120 ECD patients and then analyze them to expand the knowledge on Erdheim-Chester Disease. The goal of the study is to allow earlier diagnosis, better classification of the different disease forms, and improved prediction of the patient prognosis.

This is an opportunity for each patient to make a difference in the quest to learn more about this disease. It is something each patient can do to help our cause.

Please read the attached information. If you want to participate in the study, you will need to send your medical records, as defined in the linked document, “Checklist of Items to Send” to either Dr. Vaglio’s office in Italy, or to the ECD Global Alliance who will then forward it to Dr. Vaglio. If you send them directly to Dr. Vaglio, PLEASE keep a copy of all you send as we are hoping more studies will be started soon and they may need the same records.

Checklist of Items to Send
Consent Form
Protocol
How to Obtain Your Medical Records