Registry for Vascular Anomalies Associated With Coagulopathy
| Status: | Recruiting |
|---|---|
| Conditions: | Women's Studies, Hematology |
| Therapuetic Areas: | Hematology, Reproductive |
| Healthy: | No |
| Age Range: | Any |
| Updated: | 3/23/2017 |
| Start Date: | November 2007 |
| End Date: | December 2018 |
| Contact: | Beth A Drolet, MD |
| Email: | bdrolet@mcw.edu |
| Phone: | (414) 955-2819 |
International Registry for Vascular Anomalies Associated With Coagulopathy
PURPOSE The purpose of this study is to learn more about multifocal
lymphangioendotheliomatosis with thrombocytopenia (MLT). MLT is a rare vascular disorder
characterized by multiple congenital skin and visceral lesions, profound thrombocytopenia,
and gastrointestinal bleeding. The skin lesions may appear red, brown or blue, often
misdiagnosed as hemangiomas. The gastrointestinal tract, liver, and lungs are the most
common internal organs involved. The severe thrombocytopenia (low platelets) is believed to
be the result of platelet trapping within the skin and visceral vascular lesions. Severe and
chronic gastrointestinal bleeding is common during infancy and early childhood. Although a
relatively newly described entity, MLT was likely previously reported as hemangiomas, 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. This study is a longitudinal
cohort study of MLT to collect detailed clinical data on the distribution of disease,
disease severity, and complications. This data will be used to create diagnostic criteria
and an evaluation protocol for infants with this disease
lymphangioendotheliomatosis with thrombocytopenia (MLT). MLT is a rare vascular disorder
characterized by multiple congenital skin and visceral lesions, profound thrombocytopenia,
and gastrointestinal bleeding. The skin lesions may appear red, brown or blue, often
misdiagnosed as hemangiomas. The gastrointestinal tract, liver, and lungs are the most
common internal organs involved. The severe thrombocytopenia (low platelets) is believed to
be the result of platelet trapping within the skin and visceral vascular lesions. Severe and
chronic gastrointestinal bleeding is common during infancy and early childhood. Although a
relatively newly described entity, MLT was likely previously reported as hemangiomas, 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. This study is a longitudinal
cohort study of MLT to collect detailed clinical data on the distribution of disease,
disease severity, and complications. This data will be used to create diagnostic criteria
and an evaluation protocol for infants with this disease
After informed consent is obtained a detailed question will be mailed to participating
patients and families. This questionnaire will also be available electronically through an
educational website. Data collected will include photographs of skin lesions, video images
of gastrointestinal lesions, demographic data, clinical information, therapeutic
interventions, glass slides of tissue biopsies, and collection of DNA. Enrollment will be
patient family driven and modeled after several successful registries of rare diseases.
patients and families. This questionnaire will also be available electronically through an
educational website. Data collected will include photographs of skin lesions, video images
of gastrointestinal lesions, demographic data, clinical information, therapeutic
interventions, glass slides of tissue biopsies, and collection of DNA. Enrollment will be
patient family driven and modeled after several successful registries of rare diseases.
Inclusion Criteria:
- Subjects with a vascular anomaly with coagulopathy
Exclusion Criteria:
- Subjects without a vascular anomaly with coagulopathy
We found this trial at
1
site
8701 W Watertown Plank Rd
Milwaukee, Wisconsin
Milwaukee, Wisconsin
(414) 955-8296
Phone: 414-955-2818
Medical College of Wisconsin The Medical College (MCW) of Wisconsin is a major national research...
Click here to add this to my saved trials
