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FAQ

Enrolling in the Superficial Siderosis Patient Registry (SSPR) is one of the most effective ways to explore research and discover new clinical treatments for those living with superficial siderosis. The registry is an online, confidential database of standardized information about individuals with a confirmed diagnosis of superficial siderosis. By sharing your diagnostic and treatment history, you can help provide researchers with the data necessary to conduct informed research, clinical trials and identify treatment options. Our goal is to support a more positive outcome for patients allowing for an improved quality of life.

Why Should I Register?

Ultra-rare disorder global patient registries centralize clinical information from a single location allowing researchers to connect with patients. No matter where you live in the world, by joining the Superficial Siderosis Patient Registry, you will have a hand in creating a global portrait of how superficial siderosis presents and progresses. This improved understanding allows physicians to properly diagnose patients and researchers to develop superficial siderosis treatments and the associated symptoms.

Who Can Enroll In The Registry?

All persons 18 years of age or older who have received a diagnosis of superficial siderosis may register. Minors under 18 may have a parent or legal guardian submit their information on their behalf. For adults needing registration assistance, an authorized caregiver or family member may register and submit updates on their behalf.

Will My Personal Information Be Secure?

The information you provide to the Superficial Siderosis Patient Registry is kept strictly confidential. Your initial registration will require some personally-identifying information. The only person having access to the identifiable information database is the patient registry administrator to sort information requests by gender, age, or country. The questionnaires or surveys you submit may also request identifiable information but your responses will never be stored with your name attached.

Our registry utilizes Research Electronic Data Capture (REDCap), a web-based application developed by Vanderbilt University to capture clinical research data, create databases, and design projects. It is Health Insurance Portability and Accountability Act (HIPAA)–compliant and highly secure. It automatically removes 18 identifying pieces of information from data and assigns an anonymous ID number. This anonymous ID number is assigned to a file with your identifiable information (name, address, age, etc.) and to the responses you provide in the questionnaires. Your identifiable information is then stored in one database, while your responses, tagged only with an ID number, are kept in a separate database.

What Is A Natural History Study?

A natural history study is designed to follow superficial siderosis over time, including symptom information pre-diagnosis until the natural course of the disorder ends. This type of study explores the disorder comprehensively and identifies the variables that correlate with the patient population and the natural outcome.  Natural history studies have many potential uses, such as patient care best practice developments and clinical trial recruitment.

What Is A Clinical Trial?

In clinical trials, participants undergo interventions in a research plan or protocol designed by the investigators. These interventions might be drugs, non-prescription dietary supplements, medical devices, procedures, or a lifestyle change. Clinical trials sometimes compare a new prescription approach to standard available therapy using a placebo that contains no active ingredients.

What Is An Observational Study?

In observational studies researchers observe patients and collect data without intervening in who recieves a diagnostic test, treatment or drug intervention. Patients under a care plan from their physician report on the effects and results of care.