Along with our update below, Dr. Schankin has shared a direct message about his study, which is attached at the end.
On behalf of the principal investigators for the first experimental medication study for Visual Snow Syndrome, including Dr. Christoph Schankin, Dr. Peter Goadsby, and Dr. Francesca Puledda, Dr. Schankin has reported a delay due to new regulatory requirements mandated by the ethics committee in Switzerland.
Originally, Dr. Schankin informed the Visual Snow Initiative (VSI) that the study’s completion was estimated for July 2025. Although his team was prepared to proceed with research and begin participant recruitment, the timeline will be extended until the newly-mandated requirements are fulfilled. These include gathering additional clinical and research data on VSS, submitting a revised proposal, and obtaining necessary approvals.
This study builds on foundational work by Dr. Puledda, supported by VSI, which used advanced imaging to identify altered brain networks in VSS. Her team found disruptions in serotonin and glutamate systems, with recent evidence also implicating GABA and 5-HT2A receptors. These findings led to the development of this experimental study, which aims to test whether a specific medication can safely modulate these networks and reduce symptoms. Moving forward, Dr. Schankin, Dr. Goadsby, and Dr. Puledda continue their work to deepen understanding of VSS and explore additional treatment strategies informed by their findings, including pharmacological approaches, neuromodulation techniques such as TMS, and more.
Delays like this can be frustrating but are often part of the scientific process for conditions like VSS, which are still emerging and have historically faced underfunding and skepticism. When a condition has been misunderstood or overlooked for decades, pushing first-of-its-kind research forward often comes with systemic obstacles. As many already know, this is a common reality in advocacy and research for VSS and other marginalized conditions, where progress is shaped by factors such as study type (medication versus noninvasive), geographic location, evolving safety regulations, limited funding, and broader geopolitical or global health challenges.
VSS was first clinically documented in 1944 but only recently recognized as a distinct condition. This study was proposed before its inclusion in the ICD-11, a milestone that helps legitimize VSS and support future research.
We understand how important this research is to the VSS and medical communities and share your eagerness to see it move forward. We remain encouraged by the continued efforts of Dr. Schankin, Dr. Goadsby, and Dr. Puledda as they work to advance their studies within regulatory frameworks. We will share any new information from the research team as soon as it is relayed to us, through our website, newsletter, and social media channels.
On behalf of VSI and the research team, thank you for your ongoing patience and support.
A message directly from Dr. Schankin is also attached.
