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Mucopolysaccharidoses clinical trials

View clinical trials related to Mucopolysaccharidoses.

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NCT ID: NCT03292887 Completed - Hunter Syndrome Clinical Trials

Hunter Outcome Survey (HOS)

HOS
Start date: October 3, 2005
Phase:
Study type: Observational [Patient Registry]

The purpose of this study is to collect data that will increase understanding of Hunter syndrome. The data from HOS may provide guidance to healthcare professionals about disease treatment options.

NCT ID: NCT03227042 Active, not recruiting - Clinical trials for Mucopolysaccharidosis Type IIIB

A Prospective Natural History Study of Mucopolysaccharidosis Type IIIB (MPS IIIB)

Start date: November 16, 2017
Phase:
Study type: Observational

This is a natural history study for children up to 18 years of age who have been diagnosed with Mucopolysaccharidosis Type IIIB (MPS IIIB, also known as Sanfilippo Syndrome Type B). Mucopolysaccharidosis type IIIB is a severe neurodegenerative disorder. The information gathered from this trial may help inform the design and interpretation of subsequent interventional studies. No clinical intervention or study drug is provided by Allievex in this study.

NCT ID: NCT03204370 Recruiting - Clinical trials for Mucopolysaccharidosis IV A

Natural History of Atypical Morquio A Disease

Start date: February 1, 2018
Phase:
Study type: Observational

Mucopolysaccharidosis IVA (MPS IVA) (or Morquio A disease) is a rare recessive autosomal lysosomal storage disorder caused by deficiency of N-acetylgalactosamine-6-sulfatase (GALNS) resulting in accumulation of the glycosaminoglycans (GAGs) chondroitin-6-sulfate and keratin sulfate (KS). Patients display progressive development of skeletal and joint abnormalities and non-skeletal features including respiratory, cardiac, sensorial and neurological complications. Recently, a specific treatment using enzyme replacement therapy (ERT) with recombinant human GALNS (elosulfase alfa) has become available. A multicenter double-blind placebo-controlled phase 3 trial (176 patients, age > 5 yrs) showed significant improvement in endurance of 22.5 m in 6 Minute Walking Test (6MWT) distance after 24 weeks of treatment with elosulfase alfa at 2.0 mg/kg/week as compared with placebo group. In addition to ERT, a multidisciplinary management approach is necessary for coordinating assessment and follow-up as well as for providing individualized supportive and symptomatic care. The clinical presentation is highly variable from one patient to another regarding age at onset, severity, progression rate and life expectancy. Most patients are affected with the classical phenotype characterized by short trunk dwarfism with short neck and adult height < 1 m. Atypical phenotypes with less severe extension of skeletal manifestations, adult height > 1m, and less frequent complications in other organs have been progressively recognized. Clinical management differs depending on the clinical presentation of the patients but natural history of the disease is largely unknown in atypical phenotypes. Precise and exhaustive follow-up data are needed in such patients to increase our knowledge of this natural history and to define the best criteria to evaluate ERT efficiency. The investigators propose a prospective clinical study focused on a unique large series of 9 adult patients (aged from 18 to 55 years) followed in a single expert center for metabolic disorders located at the university hospital of Bordeaux, France. Eight of these patients are affected with atypical MPS IVA characterized by less severe evolution of the disease and heights ranging from 135 to 176 cm (the last patient height is 102 cm). Investigators aim to increase knowledge on the natural history of the disease in adult patients with atypical MPS IVA, treated or not with ERT, and to develop new objective and robust clinical criteria to evaluate the efficiency of ERT over time, particularly in patients presenting an atypical phenotype. The entire cohort treated or not treated with ERT, will be evaluated at baseline and every year during a 5-years period. The complete evaluation at baseline will be our absolute priority as well as obtaining long-term and exhaustive follow up of the patients treated with ERT (two patients of the cohort already treated, and ERT expected in three additional patients in the next months). The investigators designed a schedule of systematic and exhaustive assessments based on the recommended follow up from experts panel consensus meeting (MorCAP protocol) extended to some additional investigations including motor, cardiac and rheumatologic exams as our specific focus.

NCT ID: NCT03173521 Active, not recruiting - Clinical trials for Mucopolysaccharidosis Type VI

Gene Therapy in Patients With Mucopolysaccharidosis Disease

Start date: July 17, 2017
Phase: Phase 1/Phase 2
Study type: Interventional

This study investigated the safety and efficacy of gene therapy approaches for Mucopolysaccharidosis type VI disease caused by the deficiency of arylsulfatase B (ARSB) enzyme. The aim of the study is to evaluate the safety and efficacy of the treatment.

NCT ID: NCT03161171 Completed - Coping Behavior Clinical Trials

Parental Coping With Challenging Behavior in Mucopolysaccharidosis Type I-III

Start date: July 6, 2017
Phase: N/A
Study type: Observational

The study quantitates behavioral challenges in mucopolysaccharidosis type I-III and parental coping strategies

NCT ID: NCT03153319 Active, not recruiting - Clinical trials for Mucopolysaccharidosis II

Study to Evaluate the Safety and Efficacy of Adalimumab in MPS I, II, and VI

Start date: June 5, 2017
Phase: Phase 1/Phase 2
Study type: Interventional

Randomized, double-blind, placebo-controlled, parallel-group, single-center study followed by open-label phase, to evaluate the effects of adalimumab compared to placebo on the change from baseline in joint and skeletal disease in children and adults with mucopolysaccharidosis (MPS) I, II or VI.

NCT ID: NCT03150069 Completed - Morquio Disease Clinical Trials

Pregnancy With Morquio Syndrome - What Are Patients' Perspectives and Has ERT Changed Them?

MorqPreg
Start date: May 10, 2017
Phase:
Study type: Observational

The present study seeks to interview women with Morquio A and Morquio B syndrome, to explore their concerns surrounding pregnancy and the impact of ERT on their perspectives, in comparison with the control group of Morquio B subjects for whom no ERT treatment exists. Interviews will be conducted by a health psychologist, in-person or over the telephone. Data will be analyzed using MAXQDA 12.0 software and Grounded Theory. Differences in thematic trends between Morquio A subjects, for whom treatment exists, and a control group of Morquio B subjects, for whom there is no treatment, will be compared.

NCT ID: NCT03128593 Completed - Clinical trials for Mucopolysaccharidosis II

A Study of JR-141 in Patients With Mucopolysaccharidosis Type II

Start date: March 30, 2017
Phase: Phase 1/Phase 2
Study type: Interventional

The purpose of this study in patients with mucopolysaccharidosis type II (MPS II) is below, - to collect the safety information of JR-141 - to evaluate the plasma pharmacokinetics of JR-141 - to explore the efficacy of JR-141 on MPS II-related central nervous system symptoms and general symptoms

NCT ID: NCT03071341 Completed - Clinical trials for Mucopolysaccharidosis I

Extension Study Evaluating Long Term Safety and Activity of AGT-181 in Children With MPS I

Start date: October 2016
Phase: Phase 1/Phase 2
Study type: Interventional

AGT-181 is a fusion protein containing alpha-L-iduronidase that is intended to deliver the enzyme peripherally and to the brain, when administered intravenously. This is a long term safety and tolerability study of AGT-181 in patients with MPS I who completed the previous 26-week study, AGT-181-101. Information on the biological activity of the investigational drug will also be collected.

NCT ID: NCT03053089 Completed - Clinical trials for Mucopolysaccharidosis I

Safety and Dose Ranging Study of Human Insulin Receptor MAb-IDUA Fusion Protein in Adults and Children With MPS I

Start date: October 2015
Phase: Phase 1/Phase 2
Study type: Interventional

AGT-181 is a fusion protein containing alpha-L-iduronidase that is intended to deliver the enzyme peripherally and to the brain, when administered intravenously. This is a safety and tolerability study to obtain safety and exposure data as well as information on the biological activity of the investigational drug. This is a two-stage, sequential, single and multi-dose study of AGT-181 in patients with MPS I. The first stage will be an open-label, single-dose, dose-escalation cohort study and the second stage will be an open-label, multi dose, adaptive dose escalation cohort study.