Diseases and Abnormalities at or Before Birth

All Conditions

Neoplasms

Blood and Lymph Conditions

Heart and Blood Diseases

Skin and Connective Tissue Diseases

Symptoms and General Pathology

Rare Diseases

Congenital Abnormalities

Lymphangioma

Lymphatic Abnormalities

Thrombocytopenia

Hemostatic Disorders

Blood Coagulation Disorders

Vascular Malformations

Hemangioma

Blister

Nevus, Pigmented

Nevus

Angiomatosis

Blood Platelet Disorders

Hematologic Diseases

Cytopenia

Vascular Diseases

Neoplasms, Vascular Tissue

Neoplasms by Histologic Type

Cardiovascular Abnormalities

Lymphatic Malformations

Blue Rubber Bleb Nevus Syndrome

Multifocal Lymphangioendotheliomatosis With Thrombocytopenia

All patients diagnosed with Multifocal lymphangioendotheliomatosis with thrombocytopenia (MLT) or with a vascular anomaly with coagulopathy

no intervention

Beth Drolet, MD

Ulrich Broeckel, MD

Howard Jacob, PhD

Michael Kelly, MD, PhD

Richard Noel, MD, PhD

Paula North, MD, PhD

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

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.

Registry for Vascular Anomalies Associated With Coagulopathy

International Registry for Vascular Anomalies Associated With Coagulopathy

Expand knowledge on consensus diagnostic criteria, atypical presentations and long term outcomes of patients with vascular anomalies

Medical College of Wisconsin

Professor of Dermatology and Pediatrics

Lymphatic Diseases

Determine protocols for treatment of airway vascular malformation and to evaluate results from treatment of these lesions.

Protocols for Treatment

Gresham T Richter, M.D.

Jessica L Boswell, BS, CRS

Controversy exists in the treatment of airway hemangiomas ranging from tracheotomy, various lasers, to open removal, none of which have proven to be a gold standard. Venous malformations of the airway are difficult to treat and also require laser therapy or open removal and often repeated treatments are required. Similarly airway lymphatic malformations can require multiple treatment modalities as well as multiple procedures and are infrequently eradicated when extensive. New uses for various lasers and differing treatment protocols are frequently developed. Review of the treatment modalities and efficacy of these methods is required. The goal of this research is to determine protocols for treatment of airway vascular malformation and to evaluate our results from treatment of these lesions.

Airway Vascular Lesions

University of Arkansas

Digestive System Diseases

Neoplasm Metastasis

Liver Diseases

Hyperplasia

Focal Nodular Hyperplasia

Neoplastic Processes

Gastrointestinal Diseases

Nodular Regenerative Hyperplasia

Hematinics

All Drugs and Chemicals

Liver Extracts

Focal liver lesions: patients discovered with new, uncharacteristic focal liver lesions at standard ultrasound

Mihai A Socaciu, MD, PhD student

The aim of the study is to assess the value of contrast enhanced ultrasound in the evaluation of de novo focal liver lesions in clinical practice, in a prospective multi-center design.

Focal liver lesions (FLL) are quite frequently discovered in daily practice at routine ultrasound and sometimes require the use of extensive investigations for a correct diagnosis, thus increasing the costs and duration of diagnosis. On the other hand, due to screening strategies for patients with liver cirrhosis, FLL are discovered very early in these patients, and they must be evaluated in order to establish a therapeutic strategy (including transplantation, surgical resection or percutaneous echoguided procedures).

Contrast enhanced ultrasound (CEUS) using second generation contrast agents is a relatively new imaging modality that allows the characterization of FLL and allows a positive diagnosis based on the vascular pattern of the lesion. The advantages of this method are the low cost as compared with other imaging modalities and the fact that it can be performed immediately after standard abdominal ultrasound, so approximately 5 minutes after CEUS (the total duration of this investigation) a confident diagnosis can be obtained.

The place of CEUS in the diagnostic algorithm of FLL is not very well established. The European Federation of Societies for Ultrasound in Medicine and Biology (EFSUMB) issued the first Guidelines regarding the use of CEUS in 2004, revised in 2008, in which the main indications of this method are presented.

The purpose of this study is to establish the value of CEUS in the evaluation of de novo FLL in clinical practice.

The study will include patients discovered with de novo FLL at standard ultrasound in which the ultrasound study is not conclusive for the positive diagnosis (the patients with simple cysts or known FLL under CEUS follow up will be excluded form the study). The standard ultrasound will be followed by the contrast study using SonoVue® (Bracco, Italy) as contrast agent. The amount of contrast agent will be documented in every patient (it depends on the ultrasound machine used and the suspected diagnosis). The examination will be performed using the dedicated contrast software of each ultrasound machine used in the study. The investigators shall also document in every patient: the indication for CEUS study, a short history including the presence of chronic hepatopathies or malignancies, the ultrasound machine used and the operator. Each examination will last about 5 min after bolus injection and will be documented by 4 video files no longer than 30 seconds each, containing: The standard study, the arterial phase, the portal phase and the late phase. Additional loops can be stored whenever it is considered necessary.

A CEUS diagnosis will be established based on the contrast study. This will be compared with the final diagnosis which will be established based on all available imaging and clinical data: computer tomography, MRI, biopsy, follow up information. A CEUS examination will be considered conclusive if, following contrast, the FLL had a typical enhancement pattern according to the EFSUMB guidelines, and inconclusive if the enhancement pattern of the lesions was not in concordance with this guide.

The stored loops will be also revised by different operators. The study design is prospective, multi-center and will be approved by the ethical review board.

Contrast Enhanced Ultrasound For The Evaluation Of Focal Liver Lesions

Contrast Enhanced Ultrasound for the Evaluation of Focal Liver Lesions - a Multi-center Study on the Usefulness in the Clinical Practice

A CEUS examination will be considered conclusive if, following contrast, the FLL had a typical enhancement pattern according to the EFSUMB guidelines, and inconclusive if the enhancement pattern of the lesions was not in concordance with this guide.

Centrul de Cercetare in Gastroenterologie si Hepatologie, Craiova

Clinica de Gastroenterologie si Hepatologie, UMF Timisoara

Institutul Regional de Gastroenterologie & Hepatologie Prof. dr. Octavian Fodor

Institutul Clinic Fundeni

Clinica de Gastroenterologie Constanta

Societatea Romana de Ultrasonografie in Medicina si Biologie

Socaciu Mihai

Anti-Inflammatory Agents

Antineoplastic Agents

Antiemetics

Neuroprotective Agents

Gastrointestinal Agents

Prednisolone

Methylprednisolone

Methylprednisolone Acetate

Methylprednisolone Hemisuccinate

Prednisolone acetate

Prednisolone hemisuccinate

Prednisolone phosphate

Glucocorticoids

Hormones

Hormone Antagonists

Protective Agents

Antineoplastic Agents, Hormonal

prednisolone

methylprednisolone

Elena Pope, MD, Msc

The purpose of the study is to determine if pulse steroids are more efficacious and safer than the standard treatment with oral corticosteroids.

Currently there is no prospective study in hemangioma patients answering critical questions such as: which type of steroid should be used,how much should we use and for how long. This study is an investigator blinded study with two arms:one arm is receiving standard treatment with daily oral corticosteroids and the other is receiving intravenous pulse corticosteroids daily for 3 days, monthly for 3 months. The main outcome of the study is assess the efficacy of each treament modality as the percentage improvement in the hemangioma's appearance. The secondary outcomes are the safety profiles of the two drugs and the changes in the angiogenesis markers as a result of treatment intervention.

Pulse Steroids Versus Oral Steroids in Problematic Hemangiomas of Infancy

The Efficacy and Safety of Intravenous Pulse Steroids Compared to Standard Oral Steroids in the Treatment of Problematic Hemangiomas in Infants: A Randomized Controlled Trial

Society for Pediatric Dermatology

The Hospital for Sick Children

Head, Section of Dermatology

Arteriovenous Malformations

Gal Shafirstein, Ph.D.

Jessica L Boswell

To develop a non-invasive, simple and affordable, measurement technique to differentiate hemangiomas from subtypes of VMS. The purpose of this study is to determine the best office based diagnositc instrument for differentiating the subtype of vascular lesions. The instrument must be simple and affordable so it can be used by primary car physicians in the doctor office. The procedure will be based on non-invasive and unharmful measurements that will be compared to the diagnosis from specialized physicians in this field and the final pathology.

Diagnosis of Hemangiomas and Vascular Malformations

Diagnosis of Hemangiomas and Vascular Malformations Using Non-invasive Imaging Devices

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization
Registry for Vascular Anomalies Associated With Coagulopathy	NCT00576888	Multifocal Lymp... Cutaneovisceral... Vascular Anomal... Hemangiomas	no intervention	-	Medical College of Wisconsin
Airway Vascular Lesions	NCT00866827	Hemangiomas Venous Malforma... Lymphatic Malfo...	Protocols for T...	-	University of Arkansas
Contrast Enhanced Ultrasound For The Evaluation Of Focal Liver Lesions	NCT01329458	Focal Nodular H... Toxic Liver Dis... Liver Metastase...		18 Years -	Societatea Romana de Ultrasonografie in Medicina si Biologie
Pulse Steroids Versus Oral Steroids in Problematic Hemangiomas of Infancy	NCT00312520	Hemangiomas	prednisolone methylprednisol...	1 Month - 4 Months	The Hospital for Sick Children
Diagnosis of Hemangiomas and Vascular Malformations	NCT00577213	Hemangiomas Vascular Malfor... Venular Malform... Venous Malforma... Lymphatic Malfo... Arteriovenous M...		- 75 Years	University of Arkansas
Contrast Enhanced Ultrasound For The Evaluation Of Focal Liver Lesions	NCT01329458	Focal Nodular H... Toxic Liver Dis... Liver Metastase...		18 Years -	Societatea Romana de Ultrasonografie in Medicina si Biologie

Spots Global Cancer Trial Database for hemangiomas

Every month we try and update this database with for hemangiomas cancer trials from around the world to help patients and their families find trials that might be right for them.
We offer this 100% free of charge and do not endorse any of the trials listed here, we hope it helps you or a loved one.

Spots Global Cancer Trial Database for hemangiomas

Every month we try and update this database with for hemangiomas cancer trials from around the world to help patients and their families find trials that might be right for them. We offer this 100% free of charge and do not endorse any of the trials listed here, we hope it helps you or a loved one.

Every month we try and update this database with for hemangiomas cancer trials from around the world to help patients and their families find trials that might be right for them.
We offer this 100% free of charge and do not endorse any of the trials listed here, we hope it helps you or a loved one.