A Study of Patients with Erdheim-Chester Disease, Collecting Data on Those Seen Over the Last 40 Years


About this study

The purpose of this study is to collect data on patients with Erdheim-Chester Disease who have been seen at Mayo Clinic, Rochester in the last 40 years.

Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.

Inclusion Criteria

  • Adult patients age ≥ 18 years
  • With Erdheim-Chester disease
  • Seen at the Mayo Clinic between January 1, 1973 – January 23, 2015

Participating Mayo Clinic locations

Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.

Mayo Clinic Location Status

Rochester, Minn.

Mayo Clinic principal investigator

Ronald Go, M.D.

Closed for enrollment

More information


Publications are currently not available

Study Results Summary

Not yet available

Supplemental Study Information

Not yet available


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