A Prospective, Noninterventional, Observational Study of Late-Onset Pompe Disease

NCT ID: NCT02221362

Last Updated: 2016-10-31

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

TERMINATED

Total Enrollment

30 participants

Study Classification

OBSERVATIONAL

Study Start Date

2014-12-31

Study Completion Date

2016-09-30

Brief Summary

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Study 701-901, a multicenter, multinational, longitudinal, non-interventional observational study in subjects, at least 18 years old, diagnosed with late-onset Pompe disease prospectively collects data to understand clinical progression in terms of respiratory function, symptomology, genotype, biochemistry, endurance and selected subject-reported measures for 24 weeks followed by a 240 week additional observation period for up to 100 subjects.

Detailed Description

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Conditions

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Late-onset Pompe Patients Untreated or Treated With rhGAA

Study Design

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Observational Model Type

CASE_CONTROL

Study Time Perspective

PROSPECTIVE

Study Groups

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Observational

No interventions

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

* Willing and able to provide written informed consent after the nature of the study has been explained and prior to any study-related procedure
* Diagnosed with late-onset Pompe disease based on current or previous genomic testing and/or endogenous GAA activity
* At least 18 years of age at study entry
* Willing and able to comply with all study procedures

Exclusion Criteria

* Requires non-invasive ventilatory support while awake and in the upright position
* Concurrent disease, medical condition, or extenuating circumstance that, in the opinion of the investigator, might compromise study completion or data collection
* Unable to perform baseline efficacy assessments
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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BioMarin Pharmaceutical

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Medical Monitor, MD

Role: STUDY_DIRECTOR

BioMarin Pharmaceutical

Locations

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Westmead Hospital, Dept. of Genetic Medicine

Westmead, New South Wales, Australia

Site Status

Women's and Children's Hospital

Adelaide, South Australia, Australia

Site Status

Monash Medical Centre

Clayton, Victoria, Australia

Site Status

Porto Alegre, , Brazil

Site Status

Recife, , Brazil

Site Status

Ribeirão Preto, , Brazil

Site Status

Alberta Children's Hospital

Calgary, Alberta, Canada

Site Status

Alexandroupoli, , Greece

Site Status

Athens, , Greece

Site Status

Larissa, , Greece

Site Status

Thessaloniki, , Greece

Site Status

St. Vincent's University Hospital

Dublin, , Ireland

Site Status

Copernicus, St. Adalbert Hospital

Gdansk, , Poland

Site Status

Diamond Clinic

Krakow, , Poland

Site Status

Insitute of Psychiatry and Neurology

Warsaw, , Poland

Site Status

Spitalul Clinic Judetean de Urgenta "Sf. Apostol Andrei"

Constanța, , Romania

Site Status

Belgrade, , Serbia

Site Status

National University Hospital

Singapore, , Singapore

Site Status

Ljubljana, , Slovenia

Site Status

Seoul National University Hospital

Seoul, , South Korea

Site Status

Hospital de la Santa Creu I Sant Pau

Barcelona, , Spain

Site Status

Hospital General Universitario Gregorio Maranon

Madrid, , Spain

Site Status

Hospital Universitari i Politecnic La Fe

Valencia, , Spain

Site Status

Mackay Memorial Hospital

Taipei, , Taiwan

Site Status

Countries

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Austria Turkey (Türkiye) Australia Brazil Canada Greece Ireland Poland Romania Serbia Singapore Slovenia South Korea Spain Taiwan

Other Identifiers

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701-901

Identifier Type: -

Identifier Source: org_study_id