Global Research Network (GRN)
A global network of medical and non-medical researchers who educate families, institutions and clinicians about PURA syndrome.
PURA Syndrome Global Research Network
The PURA Syndrome Foundation supports the PURA Syndrome Global Research Network, a global network of medical and non-medical researchers. The Global Research Network coordinates PURA syndrome research, assists in the development of the PURA Syndrome Global Patient Registry and Global PURA Biobank. Research members assist the Foundation in educating families, institutions and clinicians about PURA syndrome.
Research relating to PURA syndrome can broadly be divided into four areas:
- Clinical – Clinical study to find an accurate description of the disorder and strategies to treat patient‘s symptoms
- Model Organisms – Frog, Zebrafish and human organoid models to help us better understand how PURA functions within living systems
- Cellular Biology – Understanding of how the PURA protein interacts and functions within cells and which cellular abnormalities occur in patients with PURA-Syndrome
- Structural biochemistry – Understanding what effect PURA mutations have on the structure of the PURA protein and its binding partners
These 4 areas will draw on the Global Patient Registry and the Global Biobank for information and samples. Research completed will then help lead us to PURA-specific dietary knowledge, repurposing of medications and new treatment modalities.
PURA Syndrome Global Research Network Members
Chair and coordinator:
Prof. Matthew Guille