Our aim is to better understand the experience of patients with Lysosomal Acid Lipase Deficiency and their families in order to develop a technological solution adapted to their needs.
For the development of the technological solution, it is necessary to know different aspects and experiences that patients and their families have had to go through in the process of starting to get some symptoms or finding altered cholesterol tests until getting the diagnosis for Lysosomal Acid Lipase Deficiency (LALD). In most cases, patients do not get the diagnosis until 5 years after the first symptoms or altered blood tests.
Knowing each case will allow us to develop technology adapted to the needs of patients (and future patients) and encourage research. There are currently 42 people in Spain diagnosed with LALD, making it an ultra-rare and under-diagnosed disease, as it is estimated that between 157 and 1178 people suffer from LALD.
The surveys are the following:
The surveys have been designed for LALD patients and their relatives (carriers of the LIPA gene mutation, but that do not have LALD). Family members who are carriers of LALD may suffer from typical LALD symptoms, such as high cholesterol.
The surveys have been approved and supervised by BD Care's medical team.
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