Alkaptonuria, Alkaptonuria Severity Score Index, Homogentisate Dioxygenase, Homogentisic Acid
Conditions
Keywords
Royal Liverpool University Hospital
Brief summary
Survey of health of patients completing SONIA 2 study: A cross-sectional analysis by questionnaire
Detailed description
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
Interventions
None listed
Sponsors
Liverpool University Hospitals NHS Foundation Trust
Study design
Observational model
COHORT
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Age
25 Years to 65 Years
Healthy volunteers
No
Inclusion criteria
\- Documented diagnosis of AKU. Age ≥16 years.
Exclusion criteria
\- Not completed SONIA 2 study for the full 4-year duration.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| to collect information on their health status since completing participation in SONIA 2 | 12 months | All of the SONIA 2 completed questionnaire data collection is completed by 2 Sept 2020 |
Countries
United Kingdom
Outcome results
None listed