Ongoing and Future Research that Has Been Funded by the Visual Snow Initiative (VSI)

Core Mechanisms and Clinical Understanding of Visual Snow Syndrome

Focus: Etiology (root causes), biology, pathophysiology, brain network mechanisms, symptomatology, potential causes, and treatment targets

Researchers & Institutions:

1. Dr. Francesca Puledda – King’s College London
2. Dr. Peter Goadsby – UCLA; King’s College London
3. Dr. Christoph Schankin – Inselspital, University of Bern Hospital
4. VSI Global Research Team (collaborative support)

Biomarker Discovery and Brain Network Targeting

Focus: Identification of biomarkers and receptor-level mechanisms underlying VSS

Methods: 7-Tesla fMRI, PET imaging, TMS, EEG, and Receptor-Enriched Functional Connectivity Analysis by Targets (REACT)

Research Lead:
Dr. Francesca Puledda – King’s College London

Neural Pathway and Network Connectivity Research

Focus: Visual and sensory processing pathways implicated in VSS

Researchers & Institutions:

1. Dr. Francesca Puledda – King’s College London
2. Dr. Christoph Schankin – Inselspital, University of Bern Hospital

Electrophysiology and Brain Stimulation Studies

Focus: Cortical excitability and abnormal network activity

Methods: Low-intensity electrical stimulation, EEG measurements, electrophysiological investigations

Researchers & Institutions:

1. Dr. Francesca Puledda – King’s College London
2. Dr. Christoph Schankin – Inselspital, University of Bern Hospital

Medication Exploration and Regulatory Approval Pathways

Focus: Exploration of pharmacological treatments and ethics/regulatory approvals

Status: Paperwork filed and resubmitted; review and safety/ethics approval pending from Swissmedic review board (lengthy process)

Collaborating Researchers:

1. Dr. Francesca Puledda – King’s College London
2. Dr. Christoph Schankin – Inselspital, University of Bern Hospital
3. Dr. Peter Goadsby – UCLA; King’s College London

Neuromodulation Studies

Study 1: Transcranial Alternating Current Stimulation (tACS)

Focus: Modulating overactive brain networks associated with VSS

Methods: tACS combined with EEG

Research Lead:
Dr. Christoph Schankin – Inselspital, University of Bern Hospital (Switzerland)

Study 2: NESA XSignal Neuromodulation Device

Research Lead:
Dr. Eduardo Mayorga – Research teams in Spain and Portugal

Mindfulness-Based Cognitive Therapy for Vision (MBCT-Vision)

Focus: Large randomized controlled trial assessing symptom modulation and blood biomarkers

Researchers (United Kingdom):

1. Dr. Sui Wong
2. Janet Wingrove

Note: An MBCT-Vision for VSS module is available for free via VSI through the Oxford Mindfulness App

Research Supported by VSI Through Collaboration and Infrastructure, Grant Support, or Resources (Not Direct Funding)

Behavioral Phenotyping and Functional Impact of VSS

Study: Phenotyping the Behavioral Impacts of Visual Snow Syndrome

Focus: Visual perception, daily function, neural mechanisms, and assessment tools

Research Lead:
Dr. Alex Baldwin – McGill University

VSI Support Provided: Letters of support for CIHR grant application and study recruitment

Broad Clinical, Neurophysiological VSS Research and Advocacy

Focus: Differential diagnosis, clinical features, surveys, TMS, comprehensive VSS characterization

Sechenov University Research Team:

1. Dr. Dmitriy Vladimirovich Romanov
2. Dr. Alexey Vladimirovich Sergeev
3. Dr. Azaliya Rustamovna Nurmeeva
4. Dr. Anastasiya Anatolyevna Kononirova
5. Dr. Artem Alexandrovich Pyatkov
6. Dr. Evgeniy Sokolov

Neuro-Optometric Rehabilitation Therapy (NORT)

Focus: Diagnosis and treatment of VSS-related visual dysfunction and quality of life improvement

Leads:

1. Dr. Charles Shidlofsky
2. Terry Tsang

VSI Contributions:

1. Upon learning that Dr. Shidlofsky and Dr. Tsang were independently treating VSS patients and helping reduce symptoms, VSI connected them with each other
2. Helped organize global Neuro-Optometric Rehabilitation Therapy (NORT) masterclasses to expand clinician education on Visual Snow Syndrome
3. Maintains a publicly available directory of NORT-certified physicians through the VSI website, improving patient access to this treatment option and qualified care worldwide

Virtual Reality, Augmented Reality, and Visual Simulation Studies

Focus: Visual noise, motion-selective neurons, and perceptual mechanisms in VSS

Methods: AR, VR, simulations, dynamic visual stimuli

Researchers & Institutions:

1. Dr. Samantha Montoya – University of Minnesota
2. Dr. Francesca Puledda – King’s College London
3. Dr. Osvaldo Gervasi – Università degli Studi di Perugia
4. Dr. Damiano Perri – Università degli Studi di Perugia

Funded Initial Studies, with Ongoing Research Continuing Independently

The following research projects received initial funding, strategic support, or infrastructure assistance from the Visual Snow Initiative, with additional funding later offered by VSI. Investigators have since chosen to continue this work independently, alongside their responsibilities in clinical practice and academic teaching. Their work has made significant contributions to the understanding of Visual Snow Syndrome, advancing the field and breaking new ground. The investigators remain valued 2018 Visual Snow Conference speakers, collaborators, colleagues, and friends of VSI.

Diagnostic Classification and Assessment Tools

Research Lead:

Dr. Victoria Pelak – University of Colorado

Focus: Surveys, diagnostic frameworks, VSS assessment tools; pending publication of her TMS/rTMS research

Diagnostic Device Development

Focus: Neuro-ophthalmologic diagnostic device applicable to VSS and other conditions

Researchers & Institutions:

1. Dr. Owen White – Monash University
2. Dr. Joanne Fielding – Monash University

Please note: While funded by VSI, studies are conducted independently by research teams, sometimes collaboratively with other teams. Internal Review Boards (IRBs) oversee the research through review and approval of study protocols to ensure ethical standards and participant safety. Their timelines for completion and publication can be influenced by many factors, such as team processes, participant recruitment, available resources and technology, international laws, regulations and approvals (including safety/ethics), potential unforeseen hurdles, peer review/publishing, and the multiple commitments of research teams, including academic, clinical, and research work.