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.
这对每位患者来说，都是在深入了解这种疾病的探索过程中发挥作用的机会。这是每位患者都能为我们的事业尽一份力的方式。.
请阅读附件中的信息。如果您希望参与这项研究，需要按照链接文档《需寄送项目清单》中的要求，将您的医疗记录寄送至瓦格利奥博士在意大利的办公室，或寄送至ECD全球联盟，该联盟随后会将资料转交瓦格利奥博士。 如果您直接将资料寄给瓦格利奥博士，请务必保留所有寄出材料的副本，因为我们希望不久后能启动更多研究项目，届时可能还需要相同的资料。.