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PATIENTENREGISTER

Patientenregister für seltene Krankheiten sind eine grundlegende Voraussetzung für eine Reihe von Aktivitäten. Die systematische Datensammlung über Patienten ermöglicht Grundlagen- und klinische Forschung, epidemiologische Forschung und Beobachtungsstudien.
Patientenregister sind damit Schlüsselinstrumente zur Wissenserweiterung, 
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IamGSD arbeitet mit zwei Registern zusammen - CoRDS und Euromac - für Betroffene von McArdle und anderen seltenen neuromuskulären Glykogenosen, bei denen Belastungsintoleranz das Hauptsymptom ist. (Alle Muskel-GSDs außer GSD2 Pompe, die ein eigenes Patientenregister haben).

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EUROMAC-REGISTRIERUNG
Euromac Registry
Euromac is an initiative of the European Union and was launched in 2013. It now has over 500 patients registered. Data is entered by medical professionals who have been registered to undertake the task.
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Euromac ist eine Initiative der Europäischen Union und wurde 2013 ins Leben gerufen. Mittlerweile sind rund 400 Patienten registriert. Die Daten werden von medizinischen Fachkräften eingegeben, die für die Aufgabe ernannt wurden.

 

Obwohl weltweit offen für Patienten, wurden in der Praxis aufgrund der hohen professionellen Anforderungen der Anmeldung fast ausschließlich Patienten europäischer Muskel-Zentren angemeldet. Die Euromac-Website und die Veröffentlichungen sind in neun Sprachen verfügbar.

 

Die Daten wurden bereits für Krankheitsberichte verwendet, und um Patienten für multizentrische Studien zu gewinnen.

CoRDS REGISTRY

CoRDS Registry
IamGSD has partnered with Sanford Research to include a muscle GSD questionnaire within their registry – called Coordination of Rare Diseases at Sanford (CoRDS). The registry includes all the muscle GSDs that we cover. We would like everyone with a muscle GSD in North America to enter this registry, but it is also open to people worldwide.
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Sanford Research ist eine gemeinnützige Forschungseinrichtung in den USA. CoRDS (Koordination Seltener Krankheiten in Sanford) ist ein zentrales internationales Patientenregister für alle Seltenen Krankheiten.

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Besuche die Website von Sanford Research.

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LISTEN TO OUR PODCAST WITH CoRDS

Alyssa Mendel of CoRDS talks to IamGSD President Stacey Reason and board member Andrew Wakelin about IamGSD, McArdle’s and the CoRDS Registry. (Running time: 28 minutes.)

PATIENT ENTERED

As a patient you may enter yourself in this registry, rather than needing a clinician to do it. You can do this on-line, or request a paper document.

 

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.

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The registry is only available in English, although auto-translate should work if configured on your computer (see “Languages” button above).

 
USER GUIDANCE
for entering the IamGSD CoRDS Registry​

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Before you start

  • It may be helpful to have your McArdle notes to hand 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 back in again later. 

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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 registry entry” button to start the process.

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

  • There are instructions on screen throughout.

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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.

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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.

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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.

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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.

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Documents

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

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

  • Documents are only shared with your permission.

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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 at a later date to revise and complete your answer.

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