ECD Patient Registry

ECD research needs your help!  An Erdheim-Chester Disease patient registry database has been developed.  Now we need your data to make it useful!

The ECD Patient Registry is a medical database collecting information and/or samples from patients diagnosed with ECD.  This data will be used to help scientists advance knowledge of ECD and its treatment.  Read about the registry in detail below, including how to enroll.

Please note that by joining the ECD Patient Registry, you are NOT joining the ECD Global Alliance membership!  If you are not yet a member of the ECDGA, please also join the ECDGA by following this link below. If you are already a member, please consider also joining the Registry.

Join the ECD Global Alliance

To find out if you are eligible to participate in the ECD Patient Registry, follow this link. 

ECD Patient Registry

Read the most recent data published from the registry collection: 2020 Registry Update

In late 2018, the registry resulted in the following symptom-assessment article.  Findings conclude that patients with ECD possess widely varied and unappreciated symptomatology. A scale for patient-reported symptom assessment for patients with Erdheim-Chester disease 

Last updated: July 23, 2021

Contact Us

  • ECD Global Alliance, P.O. Box 775,
    DeRidder, LA 70634 USA

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