Search of: Klippel-Trenaunay Syndrome (KTS) - List Results

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18 Studies found for: Klippel-Trenaunay Syndrome (KTS)

Also searched for Weber syndrome and Klippel-Trenaunay. See Search Details

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Klippel-Trenaunay Syndrome (KTS) (18 records)

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NCT02332655

Active, not recruiting

Cannabidiol Expanded Access Study in Medically Refractory Sturge-Weber Syndrome

Sturge-Weber Syndrome

Drug: Cannabidiol

Interventional

Phase 1
Phase 2

Anne Comi, MD
GW Pharmaceuticals Ltd.
Faneca 66 Foundation
Hugo W. Moser Research Institute at Kennedy Krieger, Inc.

Other / Industry

Intervention Model: Single Group Assignment
Masking: None (Open Label)
Primary Purpose: Treatment

Change in seizure frequency
Change in average seizure duration by seizure type
Change in the number of episodes of status epilepticus, defined as convulsive seizure lasting longer than 10 minutes
(and 2 more...)

All

1 Month to 45 Years (Child, Adult)

NCT02332655

IRB00029264

December 2014

June 2019

January 7, 2015

March 1, 2018

Kennedy Krieger Institute
Baltimore, Maryland, United States

NCT03047980

Recruiting

Trial of Sirolimus for Cognitive Impairment in Sturge-Weber Syndrome

Sturge-Weber Syndrome

Drug: Sirolimus

Interventional

Phase 2
Phase 3

Anne Comi, MD
Children's Hospital Medical Center, Cincinnati
Pfizer
(and 4 more...)

Other / Industry / NIH

Intervention Model: Single Group Assignment
Masking: None (Open Label)
Primary Purpose: Treatment

Cognitive impairments
Change in quantitative EEG
Sturge-Weber syndrome clinical neuroscore
(and 2 more...)

All

3 Years to 31 Years (Child, Adult)

NCT03047980

IRB00079722
2U54NS065705
BVMC6209

January 2017

March 1, 2019

September 1, 2019

February 9, 2017

March 7, 2018

Kennedy Krieger Institute
Baltimore, Maryland, United States
Cincinnati Children's Hospital Medical Center
Cincinnati, Ohio, United States

NCT01425944

Recruiting

Innovative Approaches to Gauge Progression of Sturge-Weber Syndrome

Sturge-Weber Syndrome

Observational

Hugo W. Moser Research Institute at Kennedy Krieger, Inc.
National Institutes of Health (NIH)
University of California, San Francisco
(and 8 more...)

Other / NIH

Observational Model: Other
Time Perspective: Cross-Sectional

Aim 1
Aim 2
Aim 3

600

All

1 Month and older (Child, Adult, Older Adult)

NCT01425944

NA_00038014
U54NS065705-02
BVMC6202
BVMC6208

September 2010

July 2020

August 30, 2011

September 12, 2017

Kennedy Krieger Institute
Baltimore, Maryland, United States
Wayne State University/Children's Hospital of Michigan
Detroit, Michigan, United States
New York University
New York, New York, United States
(and 4 more...)

NCT01997255

Withdrawn

Adjunctive Everolimus (RAD 001) Therapy for Epilepsy in Children With Sturge-Weber Syndrome (SWS)

Sturge Weber Syndrome

Drug: Everolimus

Interventional

Phase 2

Baylor College of Medicine
Novartis Pharmaceuticals

Other / Industry

Intervention Model: Single Group Assignment
Masking: None (Open Label)
Primary Purpose: Treatment

Evaluate the clinical effectiveness of Everolimus as an adjunct treatment to reduce the seizure activity
Clinical progression of facial and/or body port-wine hemangioma
Clinical progression of glaucoma

All

2 Years to 18 Years (Child, Adult)

NCT01997255

H-33251
CRAD001MUS214T

April 2014

April 2016

November 28, 2013

May 5, 2016

Texas Children's Hospital
Houston, Texas, United States

NCT02080624

Completed

Efficacy and Safety Study of Topical Rapamycin Associated With Pulsed Dye Laser in Patients With Sturge-Weber Syndrome

Sturge- Weber Syndrome

Drug: Drug: Topical Rapamycin

Interventional

Phase 2

Clinica Universidad de Navarra, Universidad de Navarra

Other

Intervention Model: Single Group Assignment
Masking: Quadruple (Participant, Care Provider, Investigator, Outcomes Assessor)

Change from baseline in morphologic, chromatographic and spectrometric scores at week 6
Change from baseline in morphologic, chromatographic and spectrometric scores at week 12
Change from baseline in morphologic, chromatographic and spectrometric scores at week 18
(and 17 more...)

All

16 Years to 65 Years (Child, Adult, Older Adult)

NCT02080624

RSW2011
2010-024078-20

RSW

January 2011

September 2012

December 2012

March 6, 2014

Clinica Universidad de Navarra
Pamplona, Navarra, Spain

NCT00610402

Completed

Incidence of Ocular Antibodies in Patients With Sturge - Weber Syndrome (SWS)

Sturge - Weber Syndrome (SWS)

Other: blood sample tear drop sample

Observational

University of California, Irvine
Mainz University

Other

Observational Model: Case-Only
Time Perspective: Prospective

All

Child, Adult, Older Adult

NCT00610402

NIH-LAMMP-2006-5691

July 2007

June 2008

February 8, 2008

February 10, 2017

Beckman Laser Institute Medical clinic
Irvine, California, United States

NCT01533376

Recruiting

Treatment of Port-wine Mark in Sturge-Weber Syndrome Using Topical Timolol

Sturge Weber Syndrome
Port-wine Mark

Drug: Timolol
Drug: Preservative free artificial tear gel.

Interventional

Phase 1

Wills Eye
University of Medicine and Dentistry of New Jersey

Other

Allocation: Randomized
Intervention Model: Parallel Assignment
Masking: Double (Participant, Care Provider)
Primary Purpose: Treatment

Appearance of Port-wine Mark at treatment site

All

2 Years to 10 Years (Child)

NCT01533376

AVL-SWS-TT4PWM

February 2012

December 2019

February 15, 2012

April 25, 2018

Wills Eye Institute
Philadelphia, Pennsylvania, United States

NCT00639730

Completed

Use of the Atkins Diet for Children With Sturge Weber Syndrome

Epilepsy
Sturge Weber Syndrome

Dietary Supplement: modified Atkins diet

Interventional

Phase 1

Johns Hopkins University
Vascular Birthmarks Foundation

Other

Allocation: Non-Randomized
Intervention Model: Single Group Assignment
Masking: None (Open Label)
Primary Purpose: Treatment

Seizures
Ketosis
Safety (stroke like events)

All

2 Years to 18 Years (Child, Adult)

NCT00639730

NA_00003359

May 2006

March 2010

May 2010

March 20, 2008

May 27, 2010

Johns Hopkins Hospital
Baltimore, Maryland, United States

NCT01345305

Completed

Biomarker Development in Sturge-Weber Syndrome

Sturge-Weber Syndrome

Observational

Hugo W. Moser Research Institute at Kennedy Krieger, Inc.
National Institutes of Health (NIH)
University of California, San Francisco
National Institute of Neurological Disorders and Stroke (NINDS)

Other / NIH

Observational Model: Case-Only
Time Perspective: Prospective

Primary outcome

All

6 Months to 21 Years (Child, Adult)

NCT01345305

NA_00043846
BVMC6204
U54NS065705-02

Pilot

July 2010

November 2012

May 2, 2011

August 1, 2013

Hunter Nelson Sturge-Weber Center at Kennedy Krieger Institute
Baltimore, Maryland, United States

NCT01364857

Active, not recruiting

French National Cohort of Children With Port Wine Stain

Port Wine Stain
Klippel Trenaunay Syndrome
Parkes Weber Syndrome

Genetic: search for polymorphisms of RASA1 gene

Interventional

Not Applicable

University Hospital, Tours

Other

Intervention Model: Single Group Assignment
Masking: None (Open Label)
Primary Purpose: Prevention

complicated evolution (defined as: vascular, orthopedic or systemic involvement linked with the port wine stain)
mutations of RASA 1 gene

150

All

2 Years to 12 Years (Child)

NCT01364857

PHRN09 - GL / CONAPE

CONAPE

November 2010

November 2019

June 3, 2011

February 24, 2017

Service de dermatologie
Amiens, France
Service de dermatologie
Angers, France
Service de dermatologie
Bordeaux, France
(and 14 more...)

NCT01031992

Completed

Tranexamic Acid and Epistaxis in Hereditary Hemorrhagic Telangiectasia (HHT)

Hereditary Hemorrhagic Telangiectasia

Drug: Tranexamic acid first, than placebo
Drug: First placebo, than Tranexamic acid.

Interventional

Phase 3

University Hospital, Saarland
Pharmacia GmbH, Erlangen, Germany
Baxter Healthcare Corporation

Other / Industry

Allocation: Randomized
Intervention Model: Crossover Assignment
Masking: Quadruple (Participant, Care Provider, Investigator, Outcomes Assessor)
Primary Purpose: Treatment

Change of hemoglobin level within the phases.
Mean epistaxis score (daily duration multiplied by mean subjective daily intensity)

All

18 Years and older (Adult, Older Adult)

NCT01031992

TAHHT
141CHC9008-001

TAHHT

March 2002

August 2002

October 2002

December 15, 2009

Universitätskliniken des Saarlandes, HNO-Abteilung
Homburg, Saar, Germany

NCT02983253

Recruiting

Immunmodulation in Patients With HHT

Hereditary Haemorrhagic Telangiectasia (HHT)

Other: blood sample

Observational

University Hospital, Essen

Other

Observational Model: Cohort
Time Perspective: Cross-Sectional

Amounts of leucocytes in patients with HHT
Differences in distribution of leucocytes in patients with HHT

200

All

18 Years and older (Adult, Older Adult)

NCT02983253

ImmunUHEssen

June 2016

September 2018

December 2018

December 6, 2016

May 30, 2018

University Hospital Essen
Essen, Germany

NCT02690246

Active, not recruiting

Symptoms and Treatment Results in Hereditary Hemorrhagic Telangiectasia

Hereditary Haemorrhagic Telangiectasia (HHT)

Other: questionnaire

Observational

University Hospital, Essen

Other

Observational Model: Cohort
Time Perspective: Prospective

Effect of nasal self-packing to treat epistaxis on the quality of life in patients with HHT measured mainly by Glasgow Benefit Inventory (GBI)
Number of participants with treatment-related adverse events as assessed by CTCAE v4.0

915

All

18 Years and older (Adult, Older Adult)

NCT02690246

University Clinic Essen

February 2016

August 14, 2017

December 2018

February 24, 2016

May 30, 2018

University Hospital Essen
Essen, Germany

NCT01485224

Completed

Efficacy of Thalidomide in the Treatment of Hereditary Hemorrhagic Telangiectasia

Hereditary Hemorrhagic Telangiectasia
Epistaxis

Drug: Thalidomide

Interventional

Phase 2

IRCCS Policlinico S. Matteo

Other

Intervention Model: Single Group Assignment
Masking: None (Open Label)
Primary Purpose: Treatment

Percentage of patients showing a decrease in the frequency, intensity and duration of epistaxis and in the blood transfusion requirement.
Size and number of telangiectasias evaluated by endoscopy of nasal mucosa (recording images of the size and localization of telangiectasias)
Minimum dose of the drug that reduces bleeding
(and 4 more...)

All

18 Years and older (Adult, Older Adult)

NCT01485224

EudratCT 2011-004096-36

THALI-HHT

November 2011

October 2014

October 11, 2016

December 5, 2011

August 29, 2017

Clinica Medica 3, Fondazione IRCCS Policlinico S. Matteo
Pavia, Italy

NCT00340964

Completed

Positive Exposure: A Photography and Video Intervention for Individuals With Craniofacial Differences

Craniofacial Differences

Observational

National Human Genome Research Institute (NHGRI)
National Institutes of Health Clinical Center (CC)

NIH

All

12 Years to 20 Years (Child, Adult)

NCT00340964

999905173
05-HG-N173

June 13, 2005

January 6, 2014

June 21, 2006

June 18, 2018

National Human Genome Research Institute (NHGRI), 9000 Rockville Pike
Bethesda, Maryland, United States

NCT03001180

Recruiting

Identification of Biomarkers for Patients With Vascular Anomalies

Vascular Anomaly
Generalized Lymphatic Anomaly
Kaposiform Hemangioendothelioma
(and 4 more...)

Observational

Children's Hospital Medical Center, Cincinnati
Lymphangiomatosis and Gorham's Disease Alliance (LGDA)
Boston Children’s Hospital
(and 2 more...)

Other

Observational Model: Case-Control
Time Perspective: Cross-Sectional

Correlation of Biomarkers with Differential Diagnosis
Correlation of Biomarkers with Disease Severity
Correlation of Biomarkers with Response to Therapies

1000

All

Child, Adult, Older Adult

NCT03001180

CCHMC-LMI

April 2015

January 2050

December 22, 2016

February 14, 2018

Boston Children's Hospital
Boston, Massachusetts, United States
Cincinnati Children's Hospital Medical Center
Cincinnati, Ohio, United States

NCT01761981

Unknown ^†

Institutional Registry of Haemorrhagic Hereditary Telangiectasia

Haemorrhagic Hereditary Telangiectasia

Observational

Hospital Italiano de Buenos Aires

Other

Observational Model: Cohort
Time Perspective: Prospective

morbidity

250

All

Child, Adult, Older Adult

NCT01761981

1900

June 2012

June 2017

December 2017

January 7, 2013

December 17, 2015

Hospital Italiano de Buenos Aires
Buenos Aires, Argentina

NCT02399527

Recruiting

Lymphatic Anomalies Registry

Lymphatic Malformation
Generalized Lymphatic Anomaly (GLA)
Central Conducting Lymphatic Anomaly
(and 7 more...)

Observational

Boston Children’s Hospital
Lymphatic Malformation Institute

Other

Observational Model: Cohort
Time Perspective: Prospective

To characterize the heterogeneity of lymphatic disorders, including demographics, presentation, and complications.
To identify factors that are prognostic of the occurrence of complications, including effusions, coagulopathy, ectatic draining veins, prior infections, visceral involvement, bone involvement, and development of cardiopulmonary symptoms.
To identify factors prognostic of poor outcome and use them to develop "staging" of lymphatic anomalies.
(and 5 more...)

1000

All

Child, Adult, Older Adult

NCT02399527

P00007182

June 2013

June 2025

March 26, 2015

January 25, 2018

Boston Children's Hospital
Boston, Massachusetts, United States

† Study has passed its completion date and status has not been verified in more than two years.

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