Background and Purpose of the Study
Progressive supranuclear palsy, also called Steele-Richardson-Olszewski syndrome, is an uncommon brain disorder that causes serious problems with walking, balance and eye movements. The disorder results from deterioration of cells in areas of your brain that control body movement and thinking.
Progressive supranuclear palsy worsens over time and can lead to life-threatening complications, such as pneumonia and swallowing problems. There's no cure for progressive supranuclear palsy, so current treatment focuses on managing the signs and symptoms.
Overall Study Aim
The aim of this study is to study a large patient population of PSP patients in order to estimate the clinical burden of this condition, in terms of coexisting medical conditions, and other complications that are known to entail symptoms of this condition.
Background and Purpose of the Study
It is of scientific interest to understand the comorbidities and background rates of a number of clinical events that are known to entail sequelae of PSP within a population of PSP patients.
Overall Study Aim
To define a cohort of patients with diagnosed PSP and describe the comorbidities, background rate of events, and mortality rates within the cohort, and compare these to those of non-PSP patients.
Study Data / Design
This is a retrospective observational study, using data from the Clinical Practice Research Datalink (CPRD) supplemented with linkage data from Hospital Episode Statistics (HES) and mortality data from the Office of National Statistics (ONS).
Data Analysis
Part of the data analysis will be descriptive in nature: Patient characteristics will be summarized, and person-time incidence rates will be calculated for the clinical events of interest for each year following PSP diagnosis. Time from diagnosis to onset of clinical events will also be calculated. Additional statistical analysis will focus on evaluating the differences in risk (of experiencing an event, of mortality, etc), between the PSP vs non-PSP patient groups.
Primary Outcomes
Falls; Fall-related injuries; Falls leading to hospitalization; Unsteady gait / axial rigidity / ataxia; Mobility problems; Impaired eye movements; Swallowing problems; Speech problems; Urinary Incontinence; Erectile Dysfunction; Cognitive impairment/ dementia; Nursing care/ homebound/ bedbound; Residential Care; Walking Aids; Wheelchair Use; Palliative Care; Feeding Tube; Pneumonia (including Aspiration Pneumonia); Mortality, All cause; Life Expectancy; Cause of death; Suicide (including ideation and self harm); Myocardial Infarction (MI); Stroke/ Transient Ischaemic Attack (TIA); Chronic Obstructive Pulmonary Disease (COPD); Diabetes; Coronary Heart Disease; Kidney failure; Liver failure; Cancer; Hypersensitivity and anaphylaxis; CNS inflammation and demyelinisation; Mood disorders (including depression, which should also be reported separately); Sleep disorders
Secondary Outcomes
Patients on medications for PSP-related symptoms
Demetris Pillas - Chief Investigator - UCB Pharma Ltd
Demetris Pillas - Corresponding Applicant - UCB Pharma Ltd
Adam Jedrzejczyk - Collaborator - UCB Pharma Ltd
Anna Scowcroft - Collaborator - UCB Pharma Ltd
HES Accident and Emergency;HES Admitted Patient Care;HES Diagnostic Imaging Dataset;HES Outpatient;ONS Death Registration Data;Practice Level Index of Multiple Deprivation