The Patient Registry Registration Instructions

sspr

The website address is:    superficialsiderosispatientregistry.org   Take your time and look around the public areas of the website. The email sign-up is for general website announcements ( Map updates, Charts posted, news on requests, etc.). Other than popping in to see the location map after it updates or some of the sample charts you won’t be expected to return until we receive a request for information. A chart area will be added once we gather enough data to plug into. Your completed surveys are stored in a separate verticle database. Any personal identifying information you entered is for administration purposes only and is not included in any charts, .pdf reports or .csv requests. These are the formats we will offer for research requests. We can sort and create reports without ever looking at your individual information.   Step One: Choose your registration category.  Complete the website registration form and submit it. If there are any errors or missing entries, the submit button will not work.   Step Two: Log onto the website After you submit your registration, you will find yourself at the login area. Please make sure you accept the cookie notice. The security software will store a session…

Continue reading….

This man has had a bleed on his brain ever since he was eight years old

rhysholmes1

Doctors discovered a tumour in his brain two decades ago By Mark Smith Health Correspondent   Wales Online 11:41, 10 JUN 2018   When Rhys Holmes was just eight years old, he began experiencing constant headaches, sight problems, and terrible dizziness. After a trip to his optician who referred him to hospital, doctors discovered a tumour in his brain which needed to be removed urgently. But two decades on, the 28-year-old’s health has deteriorated again due to a slow bleed on his brain which is thought to have been caused by the initial lifesaving procedure. He says the bleed has caused iron from the blood to settle on the surface of his brain and other areas of his central nervous system. “The iron is toxic in these areas and causes various types of nerve damage, and a huge list of symptoms start to appear after the iron has been settled for a number of years,” he said. “The longer the iron is there, the more the condition progresses.” Rhys, a keen musician from Newport , said he began to notice a deterioration in his health in 2015 on a team building day out with work.“The first activity was archery in which we had an…

Continue reading….

Coming Soon! Patient Registry Website

SS Patient Directory

Going Live Soon: Superficial Siderosis Patient Registry Website   The new Superficial Siderosis Patient Registry website will be going live in a few weeks. Living With Superficial Siderosis is partnering with The Silent Bleed and our SS community advocates to promote a patient-centered superficial siderosis registry. We envision a centrally located website where SS patients around the world can share their relevant data, geographic location, and answer a research questionnaire. Our goal is to document this disease in real-time from diagnosed patients so researchers, clinicians, and physicians will be able to understand how superficial siderosis develops and progresses. If our community can offer stored data for use by and allow a researcher to ask questions of the registry members, we can help future development of promising therapies. This website will be administered by Living With Superficial Siderosis during the initial building period. Our hope is as this registry grows we can apply for inclusion on the NORD server, once we meet the requirements, and migrate to their platform.

Continue reading….