Research Participation Opportunities

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Blog Science

I would like to remind you of all the opportunities available to participate in research in our community. The first opportunity I would like to share with you is the Natural History Study. By participating in this study you have the chance to share your experiences as a patient or caregiver, so that we can better characterize GLUT1 Deficiency, and how it changes over time. One of the studies for this project is the Matrix Natural History study. This study is available in different languages and involves a series of surveys that need to be completed once and need to be updated every year. You can read more about this study following this link. The second study, is the Ciitizen digital Natural History Study. This study is currently available only for participants in the United States; however, Ciitizen is working to expand this study for international patients. Participants of this study can receive and store the patient’s medical records that are obtained form multiple hospitals and providers they choose. You can learn more about this study following this link.

A second option to participate in research, is by contributing biosamples through the biorepository. Currently, we have two biorepositories, one through COMBINEDBrain and one through Coriell. The goal of this project is to collect and store biosamples such as blood and other tissues, and have them more easily available to researchers to help improve the understanding of the disease and accelerate the development of new treatments. Here, you can learn more about this opportunity and other research opportunities.

A alternative option for participating in research, is by supporting the Glut1 team for the Million Dollar Bike Ride. When you join our team, you help us raise funds for a Glut1 Deficiency pilot Research grant with matching funds from the Penn Medicine Orphan Disease Center. In addition, you can participate in person riding your bike or walking. If you want to learn more about this option, and/or if you would like to donate, you can find more information following this link.

The last option available to participate in research is through the Research Ready Series. The purpose of this series is to build a strong, patient-centered research foundation by providing trainings on the fundamentals of scientific research and how to help make sure research is focused on what matters most to patients and their families. You can find more information about this series in this link.

Please reach out to me if you have any questions about any of these research initiatives:

Sandra Ojeda, PhD – Science Director for the Glut1 Deficiency Foundation