Our goal is to provide you with the most up to date, comprehensive and accurate medical information related to CLOVES Syndrome.
All medical material on this website is developed with oversight and direction from CLOVES Syndrome Community’s Medical Advisory Board.
Denise Adams, MD
Medical Director of the Hemangioma and Vascular Malformations Center
Cincinnati Children's Hospital
One of the Cincinnati Children's vascular team’s main priorities has been establishing standards of care for patients with these diagnoses so they can follow outcome measures. Of key interest to Dr. Adams, as an oncologist, is the improvement in care of patients with kaposiform hemangioendotheliomas (KHE). The team of experts has established a clinical registry for these patients to gain insight into the clinical characteristics of KHE patients and the long term outcomes of these patients. They also have a phase II FDA funded trial for complicated vascular anomalies and KHE patients are included in this trial. These tumors are rare but have a very high mortality and morbidity rate. It is important that the group learn more about the clinical characteristics, phenotype, biomarkers which can lead to further investigations and clinical trials.
Research Grants and Contracts
Phase II Study of Rapamycin for Complicated Vascular Anomilies. Food and Drug Administration. Sep 2009 - Aug 2013. #R01 FD 003712.
Ahmad Alomari, MD, MSc, FSIR
Co-Director of Vascular Anomalies Center at Children’s Hospital Boston
Dr. Alomari has employed a superlative combination of clinical, radiologic and interventional skills, and has discovered several new conditions, including CLOVES Syndrome, and pioneered new approaches to treatment.
Brooke Corder, MSW, LCSW
Children's Hospital Boston - Social Worker, Vascular Anomalies Center
Steven Fishman, MD
Co-Director of Vascular Anomalies Center at Children's Hospital Boston
Dr. Fishman is a full-time pediatric surgeon. His practice includes the full range of newborn and pediatric surgical care. He has a particular research and clinical interest in vascular anomalies, including hemangiomas and vascular malformations. This field is not well taught or studied in any of the classic disciplines of medicine. He is Co-Director of the multidisciplinary Vascular Anomalies Center at Childrens Hospital Boston.
He has a particular focus on developing an understanding and approach to visceral vascular anomalies. Though these anomalies are extremely rare, an international referral practice has facilitated the recognition of patterns in clinical presentation and opportunities for treatment. He has focused on developing evaluation and intervention techniques including innovative operative procedures for the treatment of visceral vascular anomalies. Recognizing the limitations of surgical techniques, he is also focusing on understanding the biologic mechanisms involved in the development and progression of these lesions. He has focused on known angiogenic modulators as well as metalloproteinases, having recently identified the likely importance of high molecular weight matrix metalloproteinases in patients with aggressive vascular anomalies. Dr. Fishman is the principle investigator on a phase I clinical trial which is well under way of a metalloproteinase inhibitor in patients with devastating lesions.
Dr. Fishman is the Secretary General of the International Society for the Study of Vascular Anomalies (ISSVA). He participates in the national and international education of specialists from multiple disciplines interested in the field of vascular anomalies as a frequent visiting professor and invited lecturer in various postgraduate symposia. In addition, he advises several patient/family-oriented support groups and frequently participates in their gatherings and clinics.
Cindy Kerr MSN, CPNP
Children's Hospital Boston - Pediatric Nurse Practitioner
Amy E. Roberts, MD
Amy Roberts, MD, received her medical degree from Dartmouth Medical School, Hanover, New Hampshire. She trained in pediatrics at the University of Massachusetts Medical Center, and in clinical genetics in the Harvard Medical School Clinical Genetics Training Program.
Since July 2004 she has worked at Children’s Hospital Boston and provides clinical service in the Department of Cardiology’s Cardiovascular Genetics Program. She is the director of a department wide patient registry and DNA repository for children with congenital heart disease (CHD) and much of her research focuses on CHD gene discovery.
Dr. Roberts is responsible for a multisite Noonan syndrome clinical research project examining genotype phenotype relationships. This research led to the discovery of the SOS1 gene and contributed to the discovery of the NRAS gene.
Darren Orbach, MD, PhD
Dr. Orbach received his BA from Princeton University, his MD from Cornell University Medical College, and his PhD from Rockefeller University. He completed a seven-year combined training program in neurology, diagnostic radiology and neuroradiology, followed by a neurointerventional radiology fellowship, all at New York University Medical Center. He is board certified in diagnostic radiology, neuroradiology and neurology. He is the Division Chief of Interventional and NeuroInterventional Radiology at Children's Hospital Boston.
Because Children's Hospital Boston draws patients with relatively rare cerebrovascular, spine, and extracranial head-and neck vascular malformations from all over the world, Dr. Orbach and his colleagues have had rich opportunities to deepen their understanding of pediatric vascular malformations and their optimal treatment. Several publications describing the relationship between CNS vascular malformations and more broad vascular anomalies have resulted, and several others are under way.
Samantha A. Spencer, MD
Children's Hospital Boston - Orthopedic Surgery
Dr. Spencer is an orthopedic surgeon who specializes in congenital lower extremity disorders, lower extremity disorders and vascular anomalies.
Edward R. Smith, MD
Boston Children's Hospital - Neurosurgery
Dr. Smith is the Director of Pediatric Cerebrovascular Surgery at Boston Children’s Hospital (BCH). As a pediatric neurosurgeon with a practice focused on cerebrovascular disease and brain tumors, Dr. Smith sees many of the central nervous system (CNS) conditions found in association with CLOVES. Dr. Smith has been involved in the authoring of related state-of-practice papers (such as the recent moyamoya article in the New England Journal of Medicine) and has participated in the creation of clinical practice guidelines, including the American Heart Association (AHA) Guidelines for the Management of Cerebrovascular Disorders in Infants and Children.
In addition to his clinical work, Dr. Smith has an active research effort, with a laboratory that studies mechanisms of vascular regulation shared by both brain tumors and cerebrovascular disease. He is interested in the development of tests to better screen for the presence, recurrence and progression of these conditions using non-invasive biomarkers. His laboratory published the first report describing the successful use of urinary biomarkers to in this population. This research, supported by the NIH and national foundations, serves as the core of an ongoing 2012-2015 national 12-center trial to study urinary biomarkers in children.
Cameron Trenor, MD
Pediatric Hematologist/Oncologist ; Vascular Anomalies Center at Children's Hospital Boston
Dr. Trenor is an active pediatric hematologist-oncologist. His practice focuses in bleeding and blood clotting disorders in addition to vascular anomalies. He is co-director of the Cerebrovascular Disorders and Stroke Program at Children's Hospital Boston.
Within the field of vascular anomalies, Dr. Trenor is focused on developing medical therapies to improve treatment and quality of life for patients. Dr. Trenor is the site principle investigator for the phase 2 trial of sirolimus for complex vascular anomalies, pioneered by Dr. Adams in Cincinatti. Dr. Trenor is developing other clinical trials for patients with hemangiomas and arteriovenous malformations. Also, he is actively developing a large registry to better characterize thousands of patients with lymphatic anomalies. Dr. Trenor lectures on vascular anomalies regularly, often to physicians in training and nurses, hoping to increase awareness and interest in this field.