The New App for Patients with Rare Disease

Lyso-gb1 has been defined as the most sensitive and specific biomarker for the Gaucher disease. A biomarker is a measurable indicator of a biological state or condition. Management of Gaucher disease includes biomarker and quality of life monitoring. CENTOGENE, a rare disease company focused on transforming clinical, genetic, and biochemical data into medical solutions for patients, has developed MyLSD: an app to support Gaucher patients’ empowerment by allowing them to easily monitor their biomarker levels. The app offers patients the possibility to order blood tests and receive results directly on their mobile phones.  In addition, the app provides a diary functionality to manage treatment dosage and frequency with an electronic calendar and reminders. A survey is also always available to enter quality of life information. Patients can thus have all the disease-related relevant information in one single point which they can access at any time from everywhere. The app provides a longitudinal view of biomarkers levels and quality of life information over time. Patients can decide to share the information with their clinicians and give them the possibility to track their data via secure web. Clinicians can thus easily check treatment effetiveness for their patients and personalize treatment based on close monitoring of patients ‘conditions. The app is free for download and will soon be extended to cover other rare diseases. It is now being used mainly by patients in Pakistan who are providing very positive feedback. It will soon be introduced in other countries.