We are delighted to inform you that we have featured in one of the foremost publications in the rare disease space. In the Autumn 2020 issue of Rare Revolution magazine we delve into some frequently asked questions regarding registries and use our expertise to debunk commonly held misconceptions about setting up your own registry.

For many organisations setting up a registry can be a daunting endeavour, rife with uncertainty, from engaging and aligning stakeholders to assessing cost and securing funding. In our 10 years of experience supporting clinical data collection, we have heard and addressed many of these same concerns.

So if you find yourself or your colleagues questioning whether a registry will “cost us millions”, or perhaps you’re more concerned about the perceived complexity in establishing a registry, set aside some time to read this short article where we address many of your issues.

Check it out: http://bit.ly/Myths-Facts

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