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What is it? 

The SPS Global Registry provides researchers with valuable data from SPS patients. It is led by The SPSRF with input from global experts, researchers, statisticians, and data analysts.

Why is it important?

The SPS Global Registry and Natural History Study will provide a more thorough understanding of SPS based on a more diverse patient population, accelerating clinical trials for better treatments.

Amanda Piquet, MD

Associate Professor of Neurology

Director, Autoimmune Neurology, University of Colorado

“Stiff person syndrome (SPS) is often misdiagnosed and likely underdiagnosed. I cannot think of a better organization outside of the SPSRF to lead this critical initiative that will be pivotal to our understanding of the disease and treatment landscape of this challenging disorder." 

Frequently Asked Questions

Please review the FAQs listed here for detailed information about the SPS Global Registry & Natural History Study. If you have additional questions not addressed in the FAQ section, please email us using the button below.

What is a registry?

A patient registry is a collection of standardized information about a group of patients who share a condition and is used for purposes such as conducting a natural history study. A natural history study is a type of study designed to track the course of a disease over time.

Why do we need a registry?

A fundamental challenge in researching a rare disease is gaining access to enough patient data. The registry will help us overcome this challenge by giving researchers a large pool of participants to study. It will also give us a better understanding of people’s symptoms, and which symptoms are most impactful among other relevant information to help better understand the disease. This wealth of data and information will strengthen our voice, help us get more funding for research, and expedite clinical trials for better treatments and hopefully a cure.

When will the registry launch?

We are currently onboarding with NORD’s IAMRARE platform which will house the data. This is a lengthy, detailed process to ensure success of the registry. We are working around the clock to prepare for a launch the end of this year. Stay tuned!

How can I get involved?

We will be reaching out to you in the future with information on how to join the registry and fill out surveys, which will give researchers the valuable data they need.


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