For Patients
Stiff Person Syndrome Spectrum Disorders Global Registry
Welcome!
The SPSD Global Registry is an online registry for people with Stiff Person Syndrome Spectrum Disorders (SPSD). It is sponsored by The Stiff Person Syndrome Research Foundation and hosted by the National Organization for Rare Disorders (NORD®) on their IAMRARE® platform. This registry will collect information from participants (or their legally authorized representatives) who are affected by SPSD.
What is a Patient Registry?
A patient registry is a collection of standardized information about a group of patients who share a condition. The information may be used for a variety of purposes such as conducting natural history studies and supporting disease-specific clinical trial recruitment. The SPSD Global Registry serves to:
- Support the design of research studies, including clinical trials that explore new rare disease treatments;
- Describe the people who have confirmed or suspected Stiff Person Syndrome Spectrum Disorders (SPSD) and to better understand the variability and stages of SPSD;
- Understand the diagnosis odyssey, including misdiagnoses;
- Understand how SPSD changes over a person’s lifetime;
- Learn about clinical practice patterns and variations over the course of treatment;
- Help to develop standard diagnostic criteria for SPSD;
- Help to develop best practices, management guidelines, and recommendations so that clinicians can know how to give the best care to improve the quality of life and outcomes of people with SPSD; and
- Identify people with confirmed or suspected SPSD who might be willing to take part in other research studies or clinical trials. Participants will be able to choose whether they want to hear about these other studies.
What types of data will be collected in the SPSD Global Registry?
The SPSD Global Registry collects data on the following topics:
- Eligibility (confirmed or suspected SPSD)
- Socio-demographics
- Lifestyle
- Family History
- Medical History
- Women’s Health
- SPSD Diagnosis and Testing
- Research and Biorepository
- SPSD Symptoms
- SPSD Treatments
- Quality of life
- Medical Records Uploads
Is the data secure?
The SPSD Global Registry follows strict government guidelines to assure patient information is protected. The platform is served over HTTPS, which means that the data is encrypted when being sent from the user’s browser to the NORD servers. The data is also kept encrypted in the NORD database. Communications between the registry platform application server and the database are also encrypted. As with any information one provides electronically, there is a very rare chance that privacy could be compromised. However, the registry and the security measures minimize the chance of this occurring.
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