Patient Reported Outcomes in Adults With Pediatric-onset Hypophosphatasia Treated With Strensiq® (Asfotase Alfa)

NCT ID: NCT04195763

Last Updated: 2024-07-10

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

COMPLETED

Total Enrollment

50 participants

Study Classification

OBSERVATIONAL

Study Start Date

2019-11-06

Study Completion Date

2024-04-12

Brief Summary

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This observational study will evaluate the treatment effect of Strensiq (asfotase alfa) on Patient Reported Outcomes (PROs) in participants diagnosed with pediatric-onset hypophosphatasia (HPP) registered in the patient support program managed by OneSource™.

Detailed Description

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Participants consenting to participate in this study will be asked to complete study questionnaires by phone interviews upon consenting (Baseline), and up to 12 months following treatment initiation with asfotase alfa. Demographic and clinical characteristics of participants in the study will be characterized.

This is an observational study and no intervention will be administered. Participants will be treated in accordance with standard of care.

Conditions

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Hypophosphatasia

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Participants with Pediatric-onset HPP

Adult participants diagnosed with pediatric-onset HPP, newly prescribed treatment with asfotase alfa, and registered in the patient support program managed by OneSource.

asfotase alfa

Intervention Type DRUG

This is an observational study and no intervention will be administered. All participants will be treated by their physician in accordance with standard of care. All medications are commercially available and will be used as directed by the treating physician.

Interventions

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asfotase alfa

This is an observational study and no intervention will be administered. All participants will be treated by their physician in accordance with standard of care. All medications are commercially available and will be used as directed by the treating physician.

Intervention Type DRUG

Other Intervention Names

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Strensiq®

Eligibility Criteria

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Inclusion Criteria

* ≥ 18 years old
* Clinical diagnosis of pediatric-onset HPP
* Naïve to asfotase alfa
* Expected to begin treatment with asfotase alfa for HPP
* Registered in OneSource
* Willing and able to provide voluntary, verbal informed consent to participate in this study

Exclusion Criteria

* Pregnant or breastfeeding
* Unable to speak and understand English
* Unable or unwilling to complete the study surveys via telephone interview at the protocol-required time points
Minimum Eligible Age

18 Years

Maximum Eligible Age

99 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Xcenda, LLC

UNKNOWN

Sponsor Role collaborator

Alexion Pharmaceuticals, Inc.

INDUSTRY

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Locations

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Xcenda, LLC

Palm Harbor, Florida, United States

Site Status

Countries

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United States

Other Identifiers

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ALX-HPP-503

Identifier Type: -

Identifier Source: org_study_id

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