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The goal of this study is to determine whether or not patients with overgrowth syndromes have decreased bone density.
It is known that patients with complex vascular malformation are at risk of decreased bone density and even vanishing bone disease. However, what is not known is if patients with OGS are at decreased bone density at locations that are distant from the vascular malformation.
This study will look at bone health in patient's with OGS in a cross sectional fashion. If they are found to be at a particular risk for decreased bone density then this can be addressed in early childhood, through nutrition and activity recommendations.
The study will consist of 15 participants, all who have a known clinical diagnosis of an overgrowth syndrome, and will be >5 years old so that they can co operate with a DEXA or Xtreme CT scan.
Study specifics:
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Patients aged 5 years old and with a known diagnosis of a OGS |
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| Measure | Description | Time Frame |
|---|---|---|
| Evidence of decreased bone density in patients with vascular malformations, confirmed by DEXA scans | One year | |
| Evidence of decreased bone density in patients with vascular malformations, confirmed by serum specific bone markers | Bone markers : Alkaline phosphatase; albumin; PTH; 1-25 dihydroxyvitamin D, 25- hydroxyvitamin D | One year |
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Inclusion Criteria:
Exclusion Criteria:
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Patients aged 5 years old and over with a known clinical diagnosis of an overgrowth syndrome such as Klippel-Trenaunay Syndrome, CLOVE syndrome, Proteus syndrome, diffuse capillary malformation with overgrowth, or other unspecified OGS.
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| Name | Affiliation | Role |
|---|---|---|
| Megha M Tollefson, MD | Mayo Clinic | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Mayo Clinic | Rochester | Minnesota | 55901 | United States |
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| Label | URL |
|---|---|
| Mayo Clinic Clinical Trials | View source |
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| ID | Term |
|---|---|
| D054079 | Vascular Malformations |
| ID | Term |
|---|---|
| D018376 | Cardiovascular Abnormalities |
| D002318 | Cardiovascular Diseases |
| D000013 | Congenital Abnormalities |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
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whole blood