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The Consensus on Stiff Person Syndrome Diagnostic Criteria Initiative

What is it? 

Establishes updated diagnostic criteria for SPS based on the consensus of international SPS experts.

Why is it important?

By providing a clear framework for clinical studies, it will result in earlier and more reliable diagnoses, improve patient outcomes, and advance research efforts.

Scott Newsome, DO, MSCS, FAAN, FANA

Professor of Neurology

Director, Johns Hopkins Stiff Person Syndrome Center

Director, Johns Hopkins Neuroimmunology and Neurological

Infectious Disease Fellowship Program

“Diagnostic criteria are extremely important for helping make the most accurate diagnosis within neurology especially when it comes to rare diseases. An international diagnostic criteria initiative led by experts in SPS is underway and will hopefully lead to increased clinician awareness and earlier diagnoses for people living with SPS. The SPSRF is involved and representing the patient’s voice and will help bring these criteria to a broader audience." 

Frequently Asked Questions

Please review the FAQs listed here for detailed information about the Consensus on Stiff Person Syndrome Diagnostic Criteria Initiative. If you have additional questions not addressed in the FAQ section, please email us using the button below.

What is the purpose of the Consensus on Stiff Person Syndrome Diagnostic Criteria Initiative?

The initiative aims to develop updated diagnostic criteria for Stiff Person Syndrome (SPS) based on the consensus of international experts. This will address the expanding spectrum of presentations and lack of awareness of non-classical phenotypes.

Why is there a need for updated diagnostic criteria for SPS?

Current criteria have not been universally adopted or rigorously developed. Many patients face delays in diagnosis and receive inappropriate treatments. Clear expert consensus criteria will help shorten the time to diagnosis and ensure accurate treatment.

How will the updated diagnostic criteria be developed?

The process will involve a rigorous methodology, including an in-depth literature review and structured consensus meetings with international SPS experts. 

What is the expected timeline for the development of the new diagnostic criteria?

The entire process is expected to take up to 24 months, including in-person and virtual meetings of the experts. The results will be published in a high-impact neurology journal and disseminated widely.

How will the new diagnostic criteria benefit SPS patients?

The updated criteria will lead to earlier and more accurate diagnoses, improving patient outcomes and advancing research efforts. It will also help prevent misdiagnosis and inappropriate treatments, ensuring patients receive proper care.

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