Building a Rare Disease Patient Registry



Con Hennessy of OpenApp was delighted to be invited to speak at the Findaure workshop – ‘Building a Rare Disease Patient Registry’.

Rare Disease Registries are a well-talked-about initiative so it was great to see an organisation dedicate a full-day workshop to it.

Findacure is an innovative and inspiring UK charity that is building the rare disease community to drive research and develop treatments. It’s vision is a world in which all rare diseases have treatments – made together with patients, for patients.

At the ‘Building a rare disease patient registry’ event, there were a number of stakeholders across the rare disease field – from people working in the industry to rare disease patients themselves who have gained expertise in the area.

It was a super well organised event and we were delighted to participate.

The 7 Steps to a Successful Registry by Con Hennessy

Con led the audience chronologically through the steps patient groups should take to building their own rare disease patient registry. The first principle of putting together a patient registry, according to Con, is to outline one’s vision. It is only once a clear vision has been established that any notion of putting together a rare disease patient registry can become realistic.

From this, the next steps can be undertaken, from identifying potential stakeholders’ needs all the way up to growing into a clinical registry. The initial steps act as a springboard to providing people with the confidence to make the later steps which may seem daunting at first.

As knowledge and engagement with the community are strengthened, it is then that educational grants are offered.

If you'd like to find out more about Findacure, please visit their website HERE.

Talk to us about building or improving a registry. Contact OpenApp today.

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