Questionnaire Follow=up Study Sonia 2

Liverpool University Hospitals NHS Foundation Trust24 enrolled

Overview

Survey of health of patients completing SONIA 2 study: A cross-sectional analysis by questionnaire

The Liverpool site will post the once only, short questionnaire (in the correct language using translated documents as appropriate) to the address of those patients who completed SONIA 2. Hospital approved translation services will be used. A return-addressed stamped envelope for ease of return will also be provided. Those who received nitisinone will be sent the nitisinone-administration questionnaire and those who did not receive nitisinone will be sent a no-nitisinone questionnaire

Study Type

OBSERVATIONAL

Enrollment

Conditions

Alkaptonuria Homogentisic Acid Homogentisate Dioxygenase Alkaptonuria Severity Score Index

Eligibility

Sex: ALLMin age: 25 YearsMax age: 65 Years

Medical Language ↔ Plain English

Inclusion Criteria: \- Documented diagnosis of AKU. Age ≥16 years. Exclusion Criteria: \- Not completed SONIA 2 study for the full 4-year duration.

Locations (1)

Liverpool Royal Hospitals NHS Foundation Trust

Liverpool, United Kingdom

Outcomes

Primary Outcomes

to collect information on their health status since completing participation in SONIA 2

All of the SONIA 2 completed questionnaire data collection is completed by 2 Sept 2020

Time frame: 12 months

Data from ClinicalTrials.gov

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