Progressive Supranuclear Palsy in India: Past, Present, and Future

Abstract

Abstract Progressive supranuclear palsy (PSP) has emerged as a key area of interest among researchers worldwide, including those in India, who have actively studied the disorder over the past several decades. This review meticulously explores the extensive range of Indian research on PSP up to the present and offers insights into both current initiatives and potential future directions for managing PSP within the region. Historical research contributions have spanned 80 publications from 1974 to 2023, encompassing diverse themes from clinical phenotyping and historical analysis to isolated investigative studies and therapeutic trials. Traditionally, these studies have been conducted in single centers or specific departments, involving a broad range of recruitment numbers. The most frequently encountered phenotype among these studies is PSP-Richardson’s syndrome, with patients typically presenting at an average age of 64 years, alongside various other subtypes. Recently, there has been a significant shift toward more collaborative research models, moving from isolated, center-based studies to expansive, multicentric, and pan India projects. A prime example of this new approach is the PAn India Registry for PSP (PAIR-PSP) project, which represents a comprehensive effort to uniformly examine the demographic, clinical, and genetic facets of PSP across India. Looking ahead, there is a critical need for focused research on unraveling genetic insights, identifying risk factors, and developing effective treatment interventions and preventive models. Given its vast population, India’s role in advancing our understanding of PSP and other tauopathies could be pivotal, and this work reflects the work on PSP in India till now.