A Study of Bone Health in Patients with Overgrowth Syndromes

Overview

About this study

The goal of this study is to determine whether or not patients with overgrowth syndromes have decreased bone density.

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

  • Age > 5 years such that the patient is able to cooperate with the DXA scan or Xtreme CT
  • Known clinical diagnosis of an overgrowth syndrome such as
    • Klippel-Trenaunay Syndrome
    • CLOVE syndrome
    • Proteus syndrome
    • diffuse capillary malformation with overgrowth
    • other unspecified OGS

 

Exclusion Criteria

  • Age < 5 years
  • Inability to comply with the scan
  • No or uncertain diagnosis of an OGS
  • Prior bisphosphonate use
  • Systemic steroids in the past 6 months
  • Pregnant women

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

Megha Tollefson, M.D.

Closed for enrollment

More information

Publications

Publications are currently not available
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CLS-20205987

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