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Examining the Natural History of Myhre Syndrome

Overview

About this study

Mayo Clinic will work with several other institutions to further classify Myhre disease. Retrospective clinical data will be obtained from the medical record and compiled to describe the disease and its characteristics. Data will be pulled from the medical record, including by not limited to, laboratory reports, growth charts, neuropsychiatric reports, clinical summaries, and demographics. Clinical photographs and other clinical imaging (such as vascular scans and radiographs) may be utilized in publications of the cases.

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:

  • 18 years or older.
  • Diagnosis of Myhre Syndrome.

Exclusion Criteria:

  • Individuals < 18 years of age.

Eligibility last updated 1/18/22. Questions regarding updates should be directed to the study team contact.

 

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 Contact

Rochester, Minn.

Mayo Clinic principal investigator

Lisa Schimmenti, M.D.

Closed-enrolling by invitation

What is this? (?)
"Close"
Not open to everyone who meets the eligibility criteria, but only those invited to participate by the study team.

Contact information:

Lisa Schimmenti M.D.

Schimmenti.Lisa@mayo.edu

More information

Publications

Publications are currently not available

More about research at Mayo Clinic

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CLS-20533407

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