Building a Rare Disease Patient Registry

18.09.2019

Registry_Presentation

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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Avoca House,

189-193 Parnell Street,

Ireland.

D01 H578

 

 

Back to in-person events, we are delighted to be face to face and learning from thought leaders across the Irish healthcare ecosystem at the Future Health Summit over the next 2 days! #FHsummit2022 https://www.futurehealthsummit.com/

A standout first session today at the #RareDiseaseSummit2022 with Amanda Moore from @angelman and @ellabalasa1, CF advocate.

There are clearly many opportunities, as well as challenges, in investing in partnerships between patient orgs and industry. #RareDisease #registry

We are delighted to be virtually attending the Rare Disease Innovation & Partnering Summit 2022!

Connect with @ConHennessy on the summit platform and learn how we support our patient organisation and industry clients in creating stronger partnerships!
https://informaconnect.com/rare-disease-summit/

OpenApp are pleased to announce the NF Registry by Children’s Tumour Foundation (CTF) is now live in four additional languages: French, Italian, Portuguese and Spanish. Learn more: https://bit.ly/3IF8fLn @ChildrensTumor #patientregistry

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