SPS Global Registry

The SPS Global Registry collects disease-specific natural history data about individuals with stiff person syndrome (SPS), including SPS spectrum disorders, with the goal of improving the understanding of SPS and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:

• Eligibility
• Socio‑demographics
• Lifestyle
• Family History
• Medical History
• Women’s Health
• SPS Diagnosis and Testing
• Research and Biorepository
• SPS Symptoms
• SPS Treatments
• Quality of life
• Medical Uploads

We are interested in sharing our data with you! If you would like access to the SPS Global Registry data for a research project, please contact our registry administrator at spsglobalregistry@stiffperson.org.