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 to translational science in meaningful ways. 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.
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.
There are three registration categories, patient, caregiver, and professional. When a patient completes the initial website registration, they are asked to complete a very short demographic survey. Caregivers are asked to also register so they can enter the non-public areas.
When questionnaire data is collected we connect it directly to charting and spreadsheets for the sole use of the project director who makes the request. This will be done with the utmost care to keep this information anonymous and your identity private. You will always be notified in advance of any specific request that would require your consent to release identifying information.
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. Currently, 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 provide direct help to researchers.
We also want to encourage clinicians, researchers, and academics to submit questionnaires or make contact. No one understands how the symptoms of superficial siderosis impact the lives of both the patient and caregivers better than we do.
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 it’s our belief that by using this registry, we can geographically locate our true numbers, collect patient and caregiver information and hopefully accelerate research.
We believe our data belongs to us, the Superficial Siderosis patient.
Will you join us by adding to our collective knowledge and help change the course of those diagnosed with Superficial Siderosis?
I live in Ontario and was diagnosed with SS last year. Medical seem to know very little if anything about the diagnoses. I hae had 2 MRI’s confirming the diagnoses. I am trying to fight this but am at a loss how. I am totally in the dark. The MRI shows predominantly involving posterior fossa structure including brainstem and cerebellum. Encephalomalacia involving the cerbellar vermis related to prior parenchymal hemorrhage. I do not know what all this means. So glad to have found this web site. My balance is very bad and have had several falls. Also ringing in my ears terrible. My left leg and foot are almost numb while driving and when I get out of bed in the morning. I have seen two neurologist. Advise do nothing and if anyone suggests anything say no HELP!
hi Jayne, I have just emailed the contact information of an SS patient who lives in Ontario.