Morquio B
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What is the Morquio B registry?

The goal of the MB registry is to map out all Morquio B and late-onset GM-1 patients and form the basis for future research endeavours, including a better understanding of GLB1 mutations and how they give rise to phenotypes that are designated to be Morquio B or late-onset GM-1. In addition, we will be able to exchange the available knowledge on available therapeutic measures and to receive early updates on novel results in basic science which may be applicable for novel future treatments. We hope indeed, that this registry will help facilitate research and care projects as suggested by colleagues in the field and/or families affected by Moquio B or late-onset GM-1.

This is an online registry / database powered by REDCap software. Data is entered in de-identified fashion. It's set up in such a way that it's easy to use and won't take much of your time (10 minutes per patient). You, as the professional, are the principal contact and no research data will be used for publication. The goal is to form a collaboration to improve the understanding of the basic characteristics and the long-term outcomes of Morquio B and late-onset GM-1 through an all-inclusive framework.

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[PDER]

Please take the short survey via the link below to send us your details. we will contact you once the research database is ready (after summer 2013) for entry of patient data.

Morquio B Disease

About this initiative

This project has been initiated by The Priest Family of Vancouver BC Canada, who have a 8 year old son with Morquio B disease. Their donation to the Canadian MPS Society has made this Morquio B registry possible. The projected is supported by TIDE BC infrastructure funds and the University of British Columbia.

Part of TIDE BC

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The mission of TIDE BC, a care and research initiative, is to create an evidence-based Best Care Practice to enhance diagnosis and treatment of rare metabolic diseases. We all are motivated by the concept of treatable inborn errors of metabolism, the possibility to translate research into better care, striving to ensure that every child has access to early diagnosis and the best available treatment. International collaboration and patient & family participation are the pillars of our work. For more information on the TIDE BC project, please visit our website.