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

Collective Voices

Project Goals

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Better understand the patient and family experience
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Better define the range of symptoms
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Identify gaps in knowledge and understanding of the disease
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Indentify gaps in treatment and patient care
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Better understand the burdens of this disease on patients and families
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Identify the most important components for a natural history study
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Develop and prioritize future service programs
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Create and prioritize a strategic research plan
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Develop better and more effective clinical trials for potential future treatments

Share your voice and help us continue learning about the patient experience by enrolling in the Natural History Study.