Real World Data

Improving access to care and treatments
Enhancing the collection of Real World Data (RWD) in Cystic Fibrosis

Depending on where someone with CF lives in Europe will determine the care they receive and whether they have access to CF medicines, including new personalised medications.

Ensuring that all persons with CF across all European countries have access to optimal treatments and care is a massive challenge that must be acknowledged and met at a European level. Collecting RWD will be integral to driving up treatment access and care for all people with CF.

RWD describes a patient’s health, wellbeing, care, and medications throughout the year and has the potential to provide deeper understanding of care needs and treatment outcomes.

Earlier this year, we mapped out current capabilities and opportunities across all 39 member countries, including potential partnership.

We are now co-designing the project with a range of stakeholders including, patient orgs, researchers, clinicians, tech and Medtech companies, and pharmaceutical companies to support its member patient organisations across Europe who want to enhance the collection of RWD in their country.

Project team
Hilde De Keyser, Chief Executive, CF Europe
Claire Francis, Project Manager
Kristof Vanfraechem, Project Advisor, Data for Patients
Jill Bonjean, Outreach, CF Europe

For more information contact: Claire Francis on

You can find previous project updates here

Contact information

  • Hilde De Keyser
  • 0032 - (0)2 61 32 716
  • Driebruggenstraat 124, 1160 Brussel
  • Chamber of Commerce number: 0640.670.746

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