NCT01858103

Brief Summary

The Expanded Access Program (EAP) is an open-label, multicenter program to:

  1. 1.Provide patients who have been diagnosed with Mucopolysaccharidosis IVA (MPS IVA) access to BMN 110 until commercial product is available
  2. 2.Collect additional information on the safety and tolerability of BMN 110 administration in patients with MPS IVA

Trial Health

60
Monitor

Trial Health Score

Automated assessment based on enrollment pace, timeline, and geographic reach

Geographic Reach
2 countries

25 active sites

Status
unknown

Health score is calculated from publicly available data and should be used for screening purposes only.

Trial Relationships

Click on a node to explore related trials.

Study Timeline

Key milestones and dates

First Submitted

Initial submission to the registry

May 15, 2013

Completed
6 days until next milestone

First Posted

Study publicly available on registry

May 21, 2013

Completed
Last Updated

April 2, 2014

Status Verified

March 1, 2014

First QC Date

May 15, 2013

Last Update Submit

March 31, 2014

Conditions

Keywords

Mucopolysaccharidosis IVA Type AMPS IVA Type AMucopolysaccharidosis IVAMPS IVAMorquio A SyndromeLysosomal Storage DisorderLSDN-acetylgalactosamine-6-sulfataseN-acetylgalactosamine-6-sulfate

Interventions

Eligibility Criteria

Sexall
Age GroupsChild (0-17), Adult (18-64), Older Adult (65+)

You may qualify if:

  • Diagnosed with MPS IVA as confirmed by either N-acetylgalactosamine-6-sulfatase (GALNS) enzymatic test (GALNS activity in affected range, beta-galactosidase and a second lysosomal sulfatase activity within normal range) or molecular diagnostic test (two mutations in GALNS identified that have previously been associated with an enzyme defect).
  • Willing and able to provide written, signed informed consent, or in the case of patients under the age of 18, provide written assent (as required by the IRB) and written informed consent by a legally authorized representative after the nature of the program has been explained, and prior to any program assessments or evaluations.
  • Sexually active patients must be willing to use an acceptable method of contraception while participating in the program.
  • Females of childbearing potential must have a negative pregnancy test at Baseline and be willing to have additional pregnancy tests during the program.
  • Willing and able to comply with all program procedures.

You may not qualify if:

  • Pregnant or breastfeeding at Baseline or planning to become pregnant (self or partner) at any time during the program. Patients who become pregnant during the program will be discontinued from the program.
  • Currently enrolled in an ongoing clinical study of BMN 110.
  • Discontinued from a BMN 110 clinical study secondary to a safety-related event.
  • Use of any investigational product (other than BMN 110 in a clinical study) or investigational medical device within 30 days prior to Baseline, or requirement for any investigational agent prior to completion of all scheduled program assessments.
  • Not a current US resident or expecting to have travel plans outside the US during the planned period of participation in the Expanded Access Program (EAP) that may interfere with dosing regimen, scheduled program visits and safety monitoring.
  • Any condition that, in the view of the Investigator or sponsor, places the patient at high risk of poor treatment compliance or of not completing the EAP.

Contact the study team to confirm eligibility.

Sponsors & Collaborators

Study Sites (25)

Unknown Facility

Birmingham, Alabama, 35294, United States

Location

Unknown Facility

Little Rock, Arkansas, 72202, United States

Location

Unknown Facility

Oakland, California, 94609, United States

Location

Unknown Facility

Orange, California, United States

Location

Unknown Facility

Aurora, Colorado, United States

Location

Unknown Facility

Washington D.C., District of Columbia, 20010, United States

Location

Unknown Facility

Hollywood, Florida, 33021, United States

Location

Unknown Facility

Miami, Florida, United States

Location

Unknown Facility

Atlanta, Georgia, 30033, United States

Location

Unknown Facility

Chicago, Illinois, 60611, United States

Location

Unknown Facility

Louisville, Kentucky, United States

Location

Unknown Facility

New Orleans, Louisiana, United States

Location

Unknown Facility

Minneapolis, Minnesota, 55404, United States

Location

Unknown Facility

Paterson, New Jersey, United States

Location

Unknown Facility

Manhasset, New York, 11030, United States

Location

Unknown Facility

New York, New York, United States

Location

Unknown Facility

Portland, Oregon, 97239, United States

Location

Unknown Facility

Philadelphia, Pennsylvania, United States

Location

Unknown Facility

Pittsburgh, Pennsylvania, 15224, United States

Location

Unknown Facility

Nashville, Tennessee, United States

Location

Unknown Facility

Houston, Texas, United States

Location

Unknown Facility

Salt Lake City, Utah, 84113, United States

Location

Unknown Facility

Seattle, Washington, United States

Location

Unknown Facility

Tacoma, Washington, 98405, United States

Location

Unknown Facility

Santurce, Puerto Rico

Location

MeSH Terms

Conditions

Mucopolysaccharidosis IVLysosomal Storage Diseases

Interventions

GALNS protein, human

Condition Hierarchy (Ancestors)

MucopolysaccharidosesCarbohydrate Metabolism, Inborn ErrorsMetabolism, Inborn ErrorsGenetic Diseases, InbornCongenital, Hereditary, and Neonatal Diseases and AbnormalitiesMucinosesConnective Tissue DiseasesSkin and Connective Tissue DiseasesMetabolic DiseasesNutritional and Metabolic Diseases

Study Design

Study Type
expanded access
Sponsor Type
INDUSTRY
Responsible Party
SPONSOR

Study Record Dates

First Submitted

May 15, 2013

First Posted

May 21, 2013

Last Updated

April 2, 2014

Record last verified: 2014-03

Locations