Glycogen storage disease type IX: Long-term follow-up of 52 patients from three European countries

Key Points

• Patients with glycogen storage disease type IX show varied clinical symptoms over time, impacting their quality of life.
• The follow-up of 52 patients reveals significant insights into treatment outcomes and management strategies.
• Long-term follow-up assessments involved monitoring biomarkers related to glycogen metabolism and overall health status.
• Findings suggest the need for tailored follow-up care to address specific health challenges faced by patients.