Real World Data

Enhancing Real World Data in Cystic Fibrosis
The role of patient organisations

Over the past six months, CF Europe has received several requests from member organisations to offer support to enhance patient advocacy through the collection of real world data (RWD). Pharmaceutical companies have also expressed support for enhanced collection of RWD, as it has become increasingly important in decision-making by Health and Technology Assessment bodies and reimbursement agencies. As a result, CF Europe is starting a project to spread the collection of RWD, led by patient organisations in their own countries, where members might be looking to enhance their capabilities, or where no such capability currently exists.

CF Europe’s member organisations span 39 countries, which equates to more than 48,000 people with CF and their families1. We know that some countries are leading the way in RWD collection and others are seeking to enhance the collection of RWD. The RWD strategy will be patient-driven, complementary to clinical trials and the ECFS-Patient Registry and will be at thebenefit of patients, health care teams, research teams (academic and industry), pharmaceutical and MedTech companies, and regulators/payers.

The aim of this project is to put people with CF at the centre of controlling their data, with transparent privacy conditions, and to report and control their data to improve therapies, healthcare services and treatments for all people with CF. CF Europe envisages a framework for the collection of RWD patient reported outcomes complementary to the European registry platform for optimal efficiency and to make use of already existing data standards and structures. The framework will include guidance on data standards, data ownership and privacy. At this time we are discussing the initiative with partners. We are also collating current practice and identifying countries where there is a desire and need to set up a patient organisation led or coordinated RWD platform.

Phase 1:
● From March – June 2021, we will be mapping out current capabilities and opportunities across all 39 member countries, including potential partnerships with governments, academia, pharmaceutical, MedTech and Technology companies.
Phase 2:
● From June 2021, we will co-design the project with partners and set up pilots areas.
Phase 3:
● We will roll out the initiative in 2022 and 2023.

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 or +44 (0)7957 667806

1 ECFS-Patient Registry.

Contact information

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