Glut1 Deficiency Collective Voices Project
The Glut1 Deficiency Collective Voices Project was designed to have a better understanding of the patient and family experience across a broad range of areas. The goals for the survey were to better define the range of symptoms, identify gaps in treatment and patient care, identify the gaps in knowledge and understanding of this disease, better understand disease burdens, identify the most important components of a future natural history study, develop and prioritize a patient-led strategic research plan, and to develop better and more effective clinical trials for potential future treatments.
We have been analyzing one section of the survey at a time and will share reports below as the analysis is completed.
We have been analyzing one section of the survey at a time and will share reports below as the analysis is completed.
