Patient Registries

OpenApp has developed a number of patient registries for rare and chronic diseases. While all diseases have their own requirements and nuances, they have a common need to assess patient care, improve care pathways and encourage research to further understand their disease and perhaps, undergo clinical trials. OpenApp’s flexible platform supports end-to-end requirements.


Core Patient Registry Features

  • Collect and Manage Flexible Patient Data Sets
    • Examples include demographic data, medical history, genetic profiles, diagnostic report, medication, adverse events, and more.
  • Suitable for Natural History and Observational Studies
  • Migrate Existing Data Sources
  • Multilingual Options
  • GDPR Compliant Platform

Clinical Reported Data for Healthcare Professionals

  • Electronic Case Report Forms (eCRF)
  • Enrollment and Baseline Forms
  • Encounter and Follow-up Forms
  • Patient Reported Outcome Measures  (PROMs)
  • Configure Access By Clinical Centre
  • Healthcare Professional Dashboards

Patient Reported Data for Patient Organizations

  • Participant (Self-)Enrollment
  • Customise Consent. For example by registry participation, trial contact, contribute anonymously to research
  • Scheduled Surveys
  • Segment by Patient Cohort
  • Email Communications by Cohort
  • Registry Manager Dashboards

Research Study Manager Features

  • Audit Trails
  • Discrepancy Notes
  • Freeze and Lock Data
  • Report Query Builder
  • Adhoc and Pre-Configured Query Reports
  • Data Export (.csv, excel, CDISC)

Latest News

OpenApp Takes Part in Epidermolysis Bullosa/ERN Registry Meeting

OpenApp Takes Part in Epidermolysis Bullosa/ERN Registry Meeting   OpenApp is delighted to take part in an ERN Working Group on Wednesday, 8th June. Representatives from all over Europe will converge in Dublin as part of the proposed ERN for Rare and Undiagnosed Skin Diseases to discuss creating a collaborative…

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OpenApp Inspire and Inform at Health Conferences

Clinical Patient Management System for European Reference Networks: A Case Study Over the past couple of weeks, some of the team here have been attending, exhibiting and speaking at various Health & Rare Disease conferences. eHealth Ireland Ecosystem Our MD Mel McIntyre gave an update at the eHealth Ireland Ecosystem…

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OpenApp Supports Rare Disease Day – Making the Voice of Rare Disease Heard

OpenApp Supports Rare Disease Day   2016 marks the ninth year that the international rare disease community celebrates Rare Disease Day. OpenApp is delighted to support this great initiative. On Monday, 29 February 2016, people living with or affected by a rare disease, patient organisations, politicians, carers, medical professionals, researchers…

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We’re so happy with our video from the weekend @rarediseaseday event in Waterford courtesy of @TheArtHand music from Irish musician Banba

We will continue to raise awareness of rare diseases in Ireland & highlight the unmet needs of the #rarecommunity


Today is #rarediseaseday2023 a very important date for both Rare Disease Awareness and Advocacy! There are over 6000 known rare diseases today, affecting 300 million people around the world.


In light of #rarediseaseday tomorrow we want to raise awareness for such an important day of the year.

We have been involved extensively with Rare Disease since 2012, knowing how hard the Rare Disease Community works to advocate for those in need:

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