International Registry for Blue Rubber Bleb Nevi

International Multifocal Lymphangiomendotheliomatosis with Thrombocytropenia Registry (Blue Rubber Bleb Nevi)

Multifocal lymphangioendotheliomatosis with thrombocytopenia (MLT) is a vascular disorder characterized by multiple skin and internal lesions, profound thrombocytopenia (low platelet counts, below 30,000-50,000). The lesions in the gastrointestinal tract often bleed leading to severe anemia. Although a relatively newly described entity, MLT was likely previously reported as blue rubber bleb nevus syndrome, diffuse hemangiomatosis, Kasabach-Merritt phenomenon, and hereditary hemorrhagic telangiectasia. This disease has also been titled cutaneovisceral angiomatosis with thrombocytopenia in the medical literature.

The Birthmark and Vascular Anomalies Center at Children’s Hospital of Wisconsin has created an interdisciplinary task force to study MLT. The task force is a collective group of clinicians and researchers from diverse pediatric specialties including; dermatology, neonatology, otolaryngology, gastroenterology, hematology/oncology, genetics and pathology. We have designed a registry to collect information on all patients with MLT. The registry will address many unanswered questions regarding risk factors and treatment options for this rare disease. Dr. Paula North, who originally described this disease, will review all biopsy specimens. This data will be used to better understand the disease, design diagnostic criteria, and create treatment guidelines. Ultimately the project will aim to obtain national funding to study the cause of MLT and generate safe and effective therapeutic interventions.

If you or your child has multifocal lymphangioendotheliomatosis with thrombocytopenia/cutaneovisceral angiomatosis with thrombocytopenia please contact us so we can learn more about this disease. This study is approved by our Internal Review Board and we will send you a consent form.

Contact Information:

Linda Go, MD, Research Fellow, Pediatric Dermatology, Medical College of Wisconsin 9200 West Wisconsin Avenue Froedert Hospital East, Department of Dermatology, Milwaukee, WI 53226  Phone: 414-266-6431            Fax: 414-266-3315 E-mail: lgo@mcw.edu

 Beth A Drolet, M.D., Professor of Dermatology and Pediatrics, Medical College of Wisconsin, Milwaukee Wisconsin Medical Director of Dermatology and Birthmarks and Vascular Anomalies Children’s’ Hospital of Wisconsin, 9200 West Wisconsin Avenue Froedert Hospital East, Department of Dermatology. E-mail: drolet@mcw.edu Phone: 414-805-5304

NOVA receives no support or compensation for the listing of Independent Research.  Please do not contact NOVA about this study.

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