You are Invited to...

Invite

ERN Population Registry Demonstration & Discussion

Here are the Details for This Webinar:

Due to the success of the last webinar, OpenApp are delighted to host another. Here are the details:

  • When is it? Thursday, 11th July, 2PM CET
  • Where is it? Join in from your laptop/desktop
  • Who's doing it? Presented by Con Hennessy, CEO, OpenApp
  • Why should I be there? To get a better understanding of what an ERN population registry might look like.
  • What's it all about? An introduction to a JRC compatible ERN registry, how to collect data from multiple data sources, and how to engage patients and clinicians/HCPs. Full details below.

 Best Practices from Multiple Patient Registry Implementations

"Once you discover the key elements to a registry, it makes designing, creating and truly implementing one easier. 

Since 2002, we have worked in health informatics. We have developed a comprehensive registry platform, deployed multiple registries across chronic and rare diseases, enabled the collection of real world evidence and implemented the CPMS for ERNs.

Our registry software is in use in over 40 countries, has over 80,000 patients and in excess of 10 million data points. 

We have been working on the European Cystic Fibrosis Society Registry since 2012. This Registry was recently qualified by the EMA CHMP committee as a model it would like to see all rare disease registries follow. In 2018, the EMA CHMP committee qualified it (coverage, core dataset, governance, quality assurance approaches and completeness of core variables), to allow its use as a data source for regulatory purposes. 

Join us where we share our best practices for your implementation and see a demo of what your registry could look like."

- Con Hennessy, CEO, OpenApp

During this live presentation, you will discover:

  • Best Practices for Successfully Implementing your Registry. Designing your registry is just the beginning. We’ll give you information so that you can ensure your registry is used over and over by all interested parties.
  • Data Governance & Consent. With all our registries developed to date, we get asked many similar questions frequently. We share our experience with data governance and consent.
  • Demonstration of Platform Ready to Deploy. Witness for yourself a demonstration of a proven, well developed registry with a core dataset ready to deploy, the JRC dataset.
  • How to Customise for a Disease Specific Platform. Understand how easily it is for us to customise this JRC platform to gather specific data points for the thematic, sub-thematic and disease specific areas.
  • How one platform can collect a wide range of data from multiple sources. There are numerous data points to collect - population, clinical/genetic registry, data warehouse, data brokerage.
  • Understand the possibilities for data exchange. Data can be exchanged with other data providers including the CPMS, disease specific registries and national registries.
  • Answer Your Questions Live. This is not a pre-recorded presentation. Join Con Hennessy live this Thursday and he'll answer your registry related questions throughout the presentation.


If you can't make this webinar and would still like to find out more about how a population registry can help your ERN, please email us instead at enquiries@openapp.ie and we'll liaise directly with you.

Latest News

ISO27001

OpenApp projects with the HSE shortlisted for Irish Health Awards 2022

1 November 2022

OpenApp projects in collaboration with the HSE shortlisted for Irish Healthcare Awards 2022 10.10.2022 Now in its 21st year, the Irish Medical Times has announced the shortlist of contenders for the 2022 Irish Healthcare Awards. Two projects evolved by OpenApp in collaboration with the Health Service Executive (HSE), were shortlisted for these…

Read More
photo showing childrens legs of different ages, Charity, childrens charity, Geolocation

The right service in the right place, meeting changing requirements, growth with geographic analysis

16 August 2022

The right service in the right place, meeting changing requirements, growth with geographic analysis.   From Anecdotal to Geolocation Decision A national charity was concerned that their intervention was no longer required in the locations their offices were situated. OpenApp were approached to carry out geographic analysis and report on…

Read More

The Right People in the Right Place

21 June 2022

Geospatial Needs Analysis = Right Service In The Right Place Historically, new mental health staff were hired on a national basis and assigned to their nearby Community Healthcare Organization (or CHOs). While additional resources were welcome, this approach ignored community need in regards to the right services provided by the…

Read More

ADDRESS

Avoca House,

189-193 Parnell Street,

Ireland.

D01 H578

 

 

EMAIL

PHONE

Irish Number:

+353 (1) 872 9331

US Number:

+1 (914) 455-0216

Just over a week to go until the Irish Healthcare Awards @HealthAwardsIrl OpenApps' projects in collaboration with the HSE are in the running for "Best Use of Information Technology" & "Public Health Initiative of the Year" 🤞https://www.openapp.ie/openapp-projects-in-collaboration-with-the-hse-shortlisted-for-irish-health-awards-2022/ #IMTIHA22

Very interesting comments by the FDA RWE panel today at #NORDSummit regarding the pros and cons of using #registry data vs. other sources of data for RWE studies. Registry data can be much higher in quality and accuracy but, at times, less efficient.

Thank you to all of our speakers, attendees, and staff for a great first day of the #NORDSummit! We look forward to learning, networking, and discussing important #RareDisease topics together again tomorrow.

"Partnerships with patients and patient advocacy groups increase #DrugDevelopment success."

- @KreherNerissa (@entradatx) at the #NORDSummit

Load More...

Copyright © 2022 OpenApplications All rights reserved.

OpenApplications Consulting Ltd. Registered in Ireland No. 355595