CoRDS REGISTRY

IamGSD has partnered with Sanford Research to include a muscle GSD questionnaire within their registry – Coordination of Rare Diseases at Sanford (CoRDS). The registry includes all the muscle GSDs that we cover. We would like everyone in North America with a muscle GSD to enter this registry.
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Sanford Research is a nonprofit research institution in the US. CoRDS (Coordination of Rare Diseases at Sanford) is a centralized international patient registry for all rare diseases.

Visit the Sanford Research web site.

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LISTEN TO OUR PODCAST WITH CoRDS

About IamGSD, McArdle’s and the CoRDS Registry (28 minutes)

As a patient you may enter yourself in this registry, rather than needing a clinician to do it. The Registry is quite straightforward and you can just dive-in and start, but it may help if you first read the notes we have prepared.

 
USER GUIDANCE
for entering the IamGSD CoRDS Registry​

Before you start

  • It may be helpful to have your McArdle notes in case you wish to refer to them while entering the registry data.

  • Have any scans ready, see the note at the end about documents. 

  • Allow about 45 minutes to an hour to complete the whole registry.

  • It is possible to exit part way through (click on your name at top right and choose “Log-out”) and log-in again later. 

To start

  • The screens are complex, so use a computer rather than a smartphone.

  • The IamGSD Questionnaire is a section of the Sanford CoRDS Registry. Click the ”Start the Registry” button to start.

  • ​On the CoRDS screen click the button on the right-hand side – “Enroll Now”.

  • There are instructions on screen throughout.

Application form

  • The first section is the Activation Form, which is about the individual participant. 

  • The preferred method of entry is on-line, but there is also an option to have the registry forms sent to you on paper in the mail.

  • When entering your Rare Disease Diagnosis, type in “muscle GSD” or part of the name of your particular GSD and you will see a list from which to choose your GSD. 

  • Read the consent information, then if happy check the acceptance check box below.

  • Click the “Submit” button.

Login setup

  • The next section allows you to setup your password and security question for login to the Registry.

  • Enter the fields and click “Log in”. 

  • You will be taken to the start of the main part of the Registry. 

  • You will also receive an email confirming the setup.

The Registry

  • As you enter the Registry data you can move back and forth through the screens using the buttons at the top right: “Previous” and “Save & Next”.

  • In fields with a magnifying glass icon it is best to click the icon, as you are then prompted with acceptable answers.

IamGSD Questionnaire

  • This is the heart of the Registry, with questions which we have developed to be relevant to muscle GSDs.

  • You should find everything quite straightforward.

Documents

  • As you finish there is an opportunity to optionally upload several 5 documents. 

  • It would be very helpful if you could upload your diagnosis letter and any genetic report.

  • Documents are only shared with your permission.

Revisions

  • To complete the Registry you must get to the end and click the Finish button.

  • You are able to go back in to the Registry to revise and complete your answers at a later date.