A Study of Bone Health in Patients with Overgrowth Syndromes

Overview

  • Study type

    Observational
  • Study IDs

  • Describes the nature of a clinical study. Types include:

    • Observational study — observes people and measures outcomes without affecting results.
    • Interventional study (clinical trial) — studies new tests, treatments, drugs, surgical procedures or devices.
    • Medical records research — uses historical information collected from medical records of large groups of people to study how diseases progress and which treatments and surgeries work best.
  • Site IRB
    • Rochester, Minnesota: 15-002284
    NCT ID: NCT02561182
    Sponsor Protocol Number: 15-002284

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. If you need assistance understanding the eligibility criteria, please contact the study team.

See eligibility criteria

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 us for help.

Mayo Clinic Location Status Contact

Rochester, Minn.

Mayo Clinic principal investigator

Megha Tollefson, M.D.

Open for enrollment

Contact information:

Tanya Saito

(507)538-8142

Saito.Tanya@mayo.edu