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Natural History Study

A natural history study follows a group of people over time who have a specific disease, collecting health information in order to understand how the disease develops and changes and how to diagnose and treat it better.

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NHS and support projects-2

The G1DF has established two opportunities to bring the power of natural history studies to the GLUT1 Deficiency patient community. Each of these natural history study components collect different types of information and complement each other to provide a more comprehensive and robust understanding of this disease.

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The GLUT1 Deficiency Natural History Study is a patient-powered data collection project on the Matrix platform in collaboration with other rare disease organizations as part of our membership in the COMBINEDBrain consortium for neurodevelopment disorders.

The Matrix platform provides a secure place to share information about symptoms, development, and medical history based on information and data provided by patients and families, which is also known as "patient reported outcomes”.

Focus:  patient reported data
What's involved? series of surveys
Who can participate? global
Languages: English, Spanish, French, Italian, German, Brazilian Portuguese, Korean, and Hebrew
Who has access? patients and caregivers can grant access to the anonymous data to researchers and industry looking to study GLUT1 Deficiency

Learn more about the Matrix study

The Rare Patient Network from Citizen Health is a secure digital platform that organizes, summarizes, and stores patient medical record information obtained from multiple hospitals and providers.

These "clinician reported outcomes" collected from looking back through the health records can be analyzed to help inform a better understanding of GLUT1 Deficiency and other rare diseases and further research toward potential treatments as well as give patients and families this information in an easy to store, organize, and access format.

Focus:  health records
What's involved? one time form to complete
Who can participate? easiest for those in USA but anyone can participate from any location if they want to upload their own records
Languages: English
Who has access? patients and caregivers can grant access to the anonymous data to researchers and industry looking to study GLUT1 Deficiency

Learn more about the citizen study

                         PATIENT POWERED RESEARCH

By enrolling in these studies, you will:

  • Help better understand the lifelong range of patient experiences
  • Contribute data to further drive research progress in GLUT1 Deficiency
  • Help researchers have a more accurate account of the number of patients
  • Help researchers understand what is important to you as a patient or caregiver
  • Help identify gaps in research and resources to better meet patient needs
  • Guide the search for better therapies and improved diagnostics
  • Have access to the tools in the registry platform to help you organize, export, and view your medical information
  • Be directly contacted about future research studies, including clinical trials

 you are the experts.

 you can best tell the story of GLUT1 Deficiency.