National Institue of Health - We (CLOVES Foundation & CLOVES Community) are pleased to announce that the National Institute of Health (NIH) has expanded their eligibility criteria to include CLOVES Syndrome and related conditions in a new research study. Announcement & FAQ
Boston Children's Hospital - Dr. Warman will continue genetic research for CLOVES, and CLOVES with Wilms Tumor. He will also be working to: develop a CLOVES mouse, develop a test to determine if someone has CLOVES, and in the future discuss working to develop medication to control the overgrowth through our CLOVES groups and/or the pharmaceutical companies. If you are a CLOVES patient and are interested in participating in his CLOVES studies, please contact:
Dr. Kyle Kurek
Our team in Boston has started a Lymphatic Anomalies Registry. For more information click the following link: Children's Hospital Lymphatic Anomalies Registry
Boston CLOVES research documentation
8/11 research update
6/12 - Boston Children's research team has found the genetic marker responsible for CLOVES Syndrome
Somatic Mosaic Activating Mutations in PIK3CA Cause CLOVES Syndrome
Dr. Adams is offering a study for patients with vascular Anomalies titled: Safety and Efficacy Study of Sirolimus in Complicated Vascular Anomalies - Completion date 2013. Please click here for more details.
Available Clinical Trials
Medical College of Wisconsin-
The investigators will do this by looking at changes in the genes and proteins in the cells of the malformation as well as normal cells.
The investigators are doing this research because currently there is no known cause of vascular malformations and no way to know whether or not other health problems will occur in addition to the malformation. Through this research we hope to create standard methods for doctors to examine and treat people with vascular anomalies.
Medical College of Wisconsin -
The purpose of this study is to determine if there are genes that are common in children with infantile hemangioma. This information will allow physicians to improve care for patients who have been diagnosed with this disease and to provide their parents with more complete information regarding the cause of this disease. This research is being done because many unanswered questions remain regarding children with infantile hemangioma. There are very few medications to treat infants with hemangiomas.