Who can join and what to expect
To participate in the patient registry, individuals must meet all of the following criteria:
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Diagnosis of MPS
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18 years old or younger
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Receiving disease-specific care in Canada
Participants
Account creation and consent
The patient registry is housed on the National Organization for Rare Disorders (NORD®) IAMRARE® platform. NORD is an independent non-profit patient advocacy organization dedicated to helping individuals with rare diseases and the organizations that serve them. NORD has extensive experience developing high-quality, customized registries for rare diseases through their IAMRARE Registry platform.
To join the patient registry, you will first need to create an account on the NORD platform.  A legal guardian is required to create the NORD account on behalf of the individual aged 18 years or younger who has a diagnosis of MPS. The legal guardian will then be asked to consent to take part in the Registry. The participating individual with MPS may also be asked to provide consent/assent, depending on their age and/or their ability to do so.
Participating in the Registry
Once you have joined the patient registry, you will be asked to fill out web-based surveys. Surveys may be completed by the individual diagnosed with MPS and/or their caregiver(s). 
Caregiver of patient diagnosed with MPS
The caregiver may be asked to complete surveys for the individual diagnosed with MPS (where applicable; dependent upon the participant's age and consent/assent). The caregiver will also be asked to provide information about themselves through caregiver surveys.
Patient diagnosed with MPS
The participant may be asked to complete surveys on their own or with the help of a caregiver (where applicable; dependent upon age and consent/assent).
Some surveys will be available immediately upon joining. Others will become available over time.  Participants will be notified when surveys are available and will also receive communications from Registry staff regarding participation in other research initiatives.
Additionally, if participants give consent, they will have the option to have their de-identified data shared as part of approved third-party requests. Participants will also have the option to:
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Receive communications from the Canadian MPS Society about their organizational initiatives 
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Receive communications from NORD regarding other NORD initiatives 
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