According to a story from Gaucher Disease News, the German drug company Centogene has recently released a free smartphone app called MyLSD which will allow patients with Gaucher disease monitor their biomarkers. While this appears to be a beneficial convenience for these patients, the International Gaucher Alliance, a patient advocacy organization, has raised some concerns. These concerns are primarily related to patient privacy, such as who will have access to the data on the app and other actions that the company could take with it.
About Gaucher Disease
Gaucher disease is a genetic disorder which is most characterized by the abnormal buildup of the substance glucocerebroside in different areas of the body. This buildup can lead to a variety of symptoms. The disease is caused by a genetic abnormality affecting the GBA gene, which is responsible for the normal function of the enzyme that normally breaks down glucocerebroside. Symptoms of Gaucher disease include enlarged spleen and liver, discolored skin, anemia, increased risk of infection and bleeding, osteoporosis, reduce sense of smell, impaired cognition, severe joint and bone pain, muscle twitches, dementia or intellectual disability, apnea, and convulsions. Neurological symptoms vary depending on the type of disease present. Gaucher disease patients are also more likely to have Parkinson’s disease. Therapies for Gaucher include enzyme replacement therapy, Miglustat, and Eliglustat. To learn more about Gaucher disease, click here.
About MyLSD
The app was created following research from April of 2018 that revealed that glucosylsphingosine (Lyso-Gb1) was the most useful biomarker for monitoring patient response to treatment in Gaucher disease. The app utilizes the CentoCard, a patented filter card from Centogene that allows patients to send in blood samples in a simple and convenient manner. The company analyzes these samples and then provides updates to patients with the app.
Tanya Collin-Histed, is the CEO of the International Gaucher Alliance, which is based out of the UK, but she says that the app asks patients to submit very sensitive data, such as what treatment they are using and dose level. While Centogene has not announced any plans to sell data to third parties, the fact remains that such data could be valuable to them. Ultimately, patients should be aware of this risk before choosing to use MyLSD.
