A rare late-onset neurodegenerative disease characterized by supranuclear gaze palsy, postural instability, progressive rigidity, and mild dementia.
Comprehensive, easy-to-understand information about this condition
How we create this content →Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Feb 8, 2026
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Feb 8, 2026
The limited documentation surrounding progressive supranuclear palsy is primarily due to its rarity, affecting fewer than 9 in 100,000 people. This rarity restricts the scope of systematic clinical studies and comprehensive phenotypic characterization. Furthermore, the genetic basis of PSP was only recently identified, and ongoing research is necessary to fully understand its clinical implications.
To navigate your care effectively, consider seeking a neurologist with expertise in neurodegenerative disorders, particularly those familiar with PSP. Resources like CurePSP (https://www.curepsp.org) and the Progressive Supranuclear Palsy Association UK (https://pspassociation.org.uk) offer valuable support and information. Additionally, inquire about participation in patient registries or natural history studies that may provide more insights into the condition. Genetic counseling may also be beneficial given the involvement of the MAPT gene.
There are currently 48 active clinical trials investigating various aspects of progressive supranuclear palsy. Notably, there are orphan drug designations for a fully human IgG1k anti-PD-L1 monoclonal antibody and a recombinant humanized IgG4P monoclonal antibody targeting human tau. For more information on ongoing trials, you can visit ClinicalTrials.gov at https://clinicaltrials.gov/search?cond=progressive%20supranuclear%20palsy.
Actionable guidance for navigating care for progressive supranuclear palsy
To navigate your care effectively, consider seeking a neurologist with expertise in neurodegenerative disorders, particularly those familiar with PSP. Resources like CurePSP (https://www.curepsp.org) and the Progressive Supranuclear Palsy Association UK (https://pspassociation.org.uk) offer valuable support and information. Additionally, inquire about participation in patient registries or natural history studies that may provide more insights into the condition. Genetic counseling may also be beneficial given the involvement of the MAPT gene.
Consider asking your healthcare providers these condition-specific questions
Connect with organizations supporting the progressive supranuclear palsy community
Helpful links for rare disease information and support
Research studies investigating treatments and therapies for this condition.
Active Trials
Total Trials
Data from ClinicalTrials.gov Feb 8, 2026
Patient Advocacy Groups (PAGs) provide support, resources, and community for patients and caregivers.
Consider asking your healthcare providers these condition-specific questions
European rare disease database
Genetic and Rare Diseases Info Center
3 peer-reviewed sources from PubMed
AI-Generated Content: This summary was generated using AI. Content has been fact-checked. Always consult with qualified healthcare providers for medical guidance.
Organizations with approved therapies for this disease
No approved therapies yet
Research is ongoing — 21 companies have orphan drug designations for this disease
Kisho delivers this disease record via API, including phenotypes (HPO), genes, orphan drug designations, screening status, and PAG mapping, with version history and governance.