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Superficial Siderosis

What is Superficial Siderosis?

Superficial Siderosis is a rare disorder causing bleeding into the spinal column that ultimately breaks down in the cerebellum and erodes myelin tissue.

 

Superficial Siderosis is a rare disorder causing bleeding into the spinal column that ultimately breaks down in the cerebellum and erodes myelin tissue.
Acknowledgement of Superficial Siderosis has not been added yet.
Prevalence Information of Superficial Siderosis has not been added yet.
Synonyms for Superficial Siderosis has not been added yet.
Cause of Superficial Siderosis has not been added yet.
Symptoms for Superficial Siderosis has not been added yet.
Diagnosis of Superficial Siderosis has not been added yet.
Diagnostic tests of Superficial Siderosis has not been added yet
Treatments of Superficial Siderosis has not been added yet.
Prognosis of Superficial Siderosis has not been added yet.
Tips or Suggestions of Superficial Siderosis has not been added yet.
References of Superficial Siderosis has not been added yet.
Online Survey Created by shannon.ashoori
Last updated 12 Aug 2020, 02:29 AM

Posted by shannon.ashoori
12 Aug 2020, 02:29 AM

Hi everyone,

You could find the link to an online survey for individuals with superficial siderosis here: https://redcap.slms.ucl.ac.uk/surveys/. This survey is looking to determine the overall quality of life in this condition, and how it may be further impacted by hearing loss. The survey is anonymous and is open to participants from around the world. The study code is MAT4YWY9R. If you have any questions regarding this survey, please contact Dr. Kharytaniuk at n.kharytaniuk@ucl.ac.uk.

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Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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Diagnosed With superficial siderosis
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Online Survey

Created by shannon.ashoori | Last updated 12 Aug 2020, 02:29 AM


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