About The Registry

Twenty-five years have passed since rare disease advocacy organizations first recognized the need for creating patient-powered registries to attract meaningful engagement with researchers. A Patient-Powered Registry (PPR) or Patient-Powered Research Network (PPRN) empowers individuals to contribute meaningfully to translational science. Translational science uses basic scientific research to create improved diagnostics, new therapies, and improved medical procedures.

“The process of turning observations in the laboratory, clinic, and community into interventions that improve the health of individuals and populations.”

– NIH National Center for Advancing Translational Sciences (NCATS)

Why Participate?

If planning begins for a clinical study, drug trial, or research paper, it’s crucial that suitable superficial siderosis patients can be identified and contacted quickly. A registry acts as a bridge connecting patients and caregivers with doctors and researchers who are trying to understand superficial siderosis. This way, we ensure as many patient demographics as possible are stored in a searchable database and ready for contact.

Superficial siderosis patient and caregiver groups on social media should no longer be our primary means of communication. Too many patients have no social media presence or, if they do, a very limited network. One more disadvantage we face is the geographic distance between our community members. This led to the realization our superficial siderosis community needed a patient registry accessible through a web-based platform.

What We Ask of You

We are asking you to take part. Before you agree to participate in this volunteer effort, you must understand what this registry is about and what will be done with the information that you provide. Our superficial siderosis patient registry takes advantage of internet security protocol, registration requirements, and restricted member login for access to profile and survey areas. Our personal information is stored the same as yours. No information will ever be offered for sale. No identifying information will ever be disclosed without your express consent. Our data are reported in an annual superficial siderosis patient registry report. A new survey is sent out every year, allowing our patient community to share their opinions on topics like clinical care, insurance, research priorities, and more.

The Power of Sharing

We believe sharing our superficial siderosis experiences and symptom history is necessary. Why? Because when patients and caregivers share real-world data, collaboration on a worldwide scale becomes possible. New treatments become possible. Most importantly, change becomes possible. Your healthcare data is inaccessible to research without your direct consent due to privacy regulations. When we voluntarily share our data, we open up the possibility of encouraging academic study, engaging medical students, and providing direct help to researchers. This patient registry enables you to help effect change. Our numbers are small in comparison to other rare diseases. We may be scattered around the world, but we believe that by using this registry, we can geographically locate our actual numbers, collect patient and caregiver information, and hopefully accelerate research.

Ownership and Empowerment

We believe our data belongs to us, the Superficial Siderosis patient. Will you join us by adding to our collective knowledge and helping change the course of those diagnosed with Superficial Siderosis?

Join the Registry