Clinical Research

Research Study Seeking Patient Volunteers

Disclaimer
This information does not represent SPD endorsement of any posted study. The SPD has no jurisdiction over or involvement directly with these studies. All studies listed have been approved by the Institutional Review Board.

If you are presently under the care of a physician for a skin condition, you should not disrupt your current treatment program before discussing it with your doctor(s).

International Registry for Vascular Anomalies Associated with Coagulopathy

Updated January 3, 2008

Description of Study:

The Birthmark and Vascular Anomalies Center at Children’s Hospital of Wisconsin has created an interdisciplinary task force to study Multifocal Lymphangioendotheliomatosis with Thrombocytopenia (MLT). The task force is a collective group of physicians and researchers from diverse pediatric specialties including; dermatology, neonatology, otolaryngology, gastroenterology, hematology/oncology, genetics, and pathology. We have designed a web-based registry to collect information and biopsy specimens on all patients with diagnosed with MLT. Dr Paula North, who originally described this disease will review all biopsy specimens. The immediate goal of the registry is to collect long-term morbidity and mortality data, so that information can be used to counsel newly diagnosed families. In addition, the registry will address many unanswered questions regarding risk factors and treatment options for this rare disease. 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 and generate safe and effective therapeutic interventions. Currently enrollment in the database is open-ended.

Skin Condition:

Multifocal lymphangioendotheliomatosis with thrombocytopenia (MLT) is a rare vascular disorder characterized by multiple congenital skin and visceral lesions, profound thrombocytopenia, and gastrointestinal bleeding. 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. The term cutaneovisceral angiomatosis with thrombocytopenia is also a term used for this same disease.

If you care for a family or child with MLT please forward this notice to them. This disease is very rare and we will need every patient. The registry is IRB approved at our institution and family driven. Families can contact our department directly and we will send consent forms to them. Please do not hesitate to contact me and thank you in advance for your precious time.

Sponsor: Children’s Research Institute-pending
**IRB Approved**

Contact:

Linda Go, MD
Research Fellow, Pediatric Dermatology
Medical College of Wisconsin
9000 W Wisconsin Ave., MS # / DEPT: B260A
Milwaukee, WI 53226
Office: 414-266-6431
Fax: 414-266-3315
E-mail: lgo@mcw.edu or bdrolet@mcw.edu

Beth A Drolet, M.D.
Professor of Dermatology and Pediatrics
Medical College of Wisconsin, Milwaukee Wisconsin
Children’s Hospital of Wisconsin
E-mail: drolet@mcw.edu
Office: 414-805-5304

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