THE PATIENT VOICE
Collective Voices in Glut1 Deficiency Project
The Plan
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 Outcomes
260 individuals from 31 countries participated in the survey. Snapshot summaries have been shared in presentations and the slides can be found below.
Collective Voices
Project Goals
Better understand the patient and family experience
Better define the range of symptoms
Identify gaps in knowledge and understanding of the disease
Indentify gaps in treatment and patient care
Better understand the burdens of this disease on patients and families
Identify the most important components for a natural history study
Develop and prioritize future service programs
Create and prioritize a strategic research plan
Develop better and more effective clinical trials for potential future treatments
Collective Voices
