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.

Patient_Registries

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

Increasing Patient Communication and Engagement: How Children’s Tumour Foundation (CTF) are reaching more patients Through Multi-Language Functionality

Increasing Patient Communication and Engagement: How Children’s Tumour Foundation (CTF) are reaching more patients Through Multi-Language Functionality 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. This new enhancement provides access to the registry…

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European Cystic Fibrosis Society Share Their Registry Experience

European cystic fibrosis society share their registry experience The European Cystic Fibrosis Society Patient Registry (ECFSPR) is one of OpenApp’s more mature registries having first been developed in 2012. It has grown exponentially through the continued work of both the European Cystic Fibrosis Society (ECFS) and OpenApp and currently accommodates…

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OpenApp Featured in Rare Revolution Magazine: Patient Registries – Myth vs Fact

OpenApp Featured in Rare Revolution Magazine: Patient Registries – Myth vs Fact 04.02.2021 Clinical Patient Management System for European Reference Networks: A Case Study 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…

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ADDRESS

Avoca House,

189-193 Parnell Street,

Ireland.

D01 H578

 

 

EMAIL

PHONE

Irish Number:

+353 (1) 872 9331

US Number:

+1 (914) 455-0216

OpenApp are delighted to announce that we will be attending the 11th ECRD conference, the largest patient-led rare disease conference. We hope to see you there!#ecrd2022

Considering a registry? But struggling with where to start and what to consider? Here's an article penned by OpenApp's CEO and Head of Business Development that sheds light on the common misconceptions about starting a registry:http://bit.ly/Myths-Facts

"Patients should be the center of everything instead of the compound" - Christopher U. Missling, PhD. #MondayMotivation #RareDisease

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