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.

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.

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.

What is IamGSD?

We are a patient-led international group encouraging efforts by research and medical professionals, national support groups and individual patients worldwide.

What is Muscle GSD?

Human bodies make glucose from carbohydrates. Excess glucose is stored as glycogen in our muscles and liver. Muscle glycogen storage disease is when our muscles cannot convert their glycogen back into glucose to power our muscles.

Muscle GSDs links
If you have another muscle GSD please contact us.

Site updated: 05/2020.

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