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The Superficial Siderosis Patient Registry

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Your Superficial Siderosis community advocates, the Living With Superficial Siderosis website and The Silent Bleed -Your Superficial Siderosis Charity have joined together in a grassroots effort to support the launch of a patient-powered registry. You are being asked to take part. Before you agree to participate in this volunteer effort, it is important that you understand what this registry is about and what will be done with the information that you provide. 

ssprThe disadvantages we fight include the geographic distance between our community members and finding interested researchers or healthcare industry partners.

Superficial Siderosis patient member groups on social media have been our primary means of communication. Recent Facebook group discussions led to the realization our Superficial Siderosis community needs a patient registry accessible through a web-based platform.

After some consideration, it seemed the most cost-effective way to a Superficial Siderosis patient registry was to build the first one ourselves. This website takes advantage of internet security protocol, registration requirements, and restricted member login for access to profile and survey areas. Our personal information will be stored the same as yours. No information will ever be offered for sale. No identifying information will ever be disclosed without your express consent. 

sspr landingThere are three registration categories, patient, caregiver, and professional. When a patient completes the initial website registration, you will be asked also to sign up to complete an initial demographic and health survey.

Your survey sign-up will be acknowledged via an automated email which will assign you a unique code and the link to the questionnaire. Please write down and keep your code. You may save your progress once you begin the survey, leave the site, and return at your convenience to finish up. This survey was compiled to help populate our database with an example of the data we can offer to your physician, interested researchers, medical students, academics, or select healthcare industries.

Caregivers may register so they can enter the non-public areas. As interest in the website builds a short care survey will be posted at a later date. A caregiver survey can offer insights, observations, and information a patient may be unaware of.

Why participate? If a clinical study, trial, or paper is being considered, it is very important that Superficial Siderosis patients suitable can be found and contacted quickly. A registry acts as a bridge connecting patients and their caregivers with doctors or researchers who are trying to understand Superficial Siderosis. This is a way to ensure we can offer as many patient demographics and health histories as possible; all collected in a searchable database.

Since this registry is not affiliated with a registered organization or the recipient of any public or private funding, please remember we need your support in spreading the word to your physician. Imagine a chart showing a significant portion of total registered patients all suffering the same symptom. This could help make your doctor understand the natural progression others are already facing.

Once enough data is collected we will be able to connect charting software to the database and create some example infographics to the private area of the site. 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.

ss map
Superficial Siderosis location map

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. Our goal is about bringing Superficial Siderosis patients and caregivers together for a higher purpose: speeding up the pace of research, discovering new or improving current treatments, and offering some hope.

Currently, most healthcare data is inaccessible due to privacy regulations. As a result, research is slow. Developing breakthrough treatment takes years. It doesn’t have to be that way. When we voluntarily share our data, we open up the possibility of encouraging academic study, engaging medical students, and hopefully, we can help researchers.

We 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 are scattered around the world. We believe that by use of the Internet and this registry we can geographically locate our 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?

 

The Superficial Siderosis Patient Registry will begin accepting registrations on Tuesday, June 12th, 2018. You may find the registry website address link by visiting livingwithss.com or www.thesilentbleed.co.uk

 

 

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