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 from a more diverse population and expands the reach of the registry.
The availability of more languages will allow participants to feel comfortable sharing data in their native languages and not have to navigate foreign terminology when discussing their conditions.
The combination of these new translations and existing registry features, such as participant surveys, registry management tools, and cohort email capabilities, have enabled CTF to grow the registry to over 10,000 participants.
Our collaboration with CTF started in 2019 through the development of a registry allowing participants to contribute to NF research by sharing their own experiences as well as learn more about relevant clinical trials. Understanding the participant experience better to drive research and contribute to the advancement of care for the NF community has always been at the forefront of the CTF objectives. These added languages are another step towards growing the registry population, enabling CTF and their partners to have a greater impact on the fight to end NF.
If you want to hear more about our work and how we can support your registry goals please contact us.
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To mark 20 years of CF data collection long time partners of ours @CFRegistryIE are hosting an event centred around patient registries. For those interested in the registry space it promises to be an informative event on a very topical subject within the rare disease industry.
To celebrate 20 years (& counting) of reporting @CFRegistryIE data, CFRI, alongside @HRCIreland, are hosting an event for those working in or with registries/are interested in developing #PatientRegistries in Ireland.
Check out more info & register here: https://www.eventbrite.co.uk/e/468480135697
An excellent Impact Report presented by NOCA Exec. Director Collette Tully, detailing the QOL of Patients post arthroplasty surgery benchmarked by country and the impact INOR has had on policy #NOCA2923 #NOCAIrl
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