Improving Healthcare with Patient Registries SRUK held a Thought Leaders Roundtable with patients, clinicians and researchers, to help us identify the barriers to accelerating progress in delivering new treatments. A key challenge has been the current lack of a consistent, coherent dataset about Scleroderma and Raynaud’s. This has led to a discussion about SRUK establishing a Patient Registry. A Patient Registry allows for key data to be collected in a standard way, which then enables a more coherent picture of the condition to be gathered and assessed. Typically, the data collected includes areas such as medical history, time taken to reach a diagnosis, treatments received and PROMS (patient reported outcomes). According to the report ‘Saving Lives with Patient Data Registries’ published in 2018 by the Association of Medical Research Charities, disease specific Patient Registries which collect data from across the UK have demonstrated considerable value to healthcare, and have been credited with significantly accelerating the rate of research, improving access to new treatments and providing the evidence base needed for policy decisionmaking.
We also wanted to understand from our clinical and patient community whether there was the appetite and support for such an initiative. There was general consensus amongst all the delegates that the creation of a single national Patient Registry would create significant opportunities.
The advantages of having such a platform include: •
Improved access to treatment and care: a registry will enable us to better monitor the efficacy of new and prescribed treatments across all locations, which could lead to improved access to treatments. The data could be used to provide evidence about best practice and improve the levels of standardised care across the centres. This has a huge advantage in removing large variations in clinical care for patients across the UK, so that each Scleroderma patient is receiving the best possible level of care available.
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Clinical trials: because Scleroderma is heterogenous in nature, identifying patients to participate in clinical trials has proved challenging. A national registry will make it easier to identify potential recruits for clinical trials just based on their symptoms. This could have a significant impact on the development of potential therapies.
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Research: advances in health data research tools mean that large and complex data sets can be more easily analysed, providing the insight needed to help further our understanding of Scleroderma.
For rare diseases such as Scleroderma, the implementation of a unified Patient Registry across the UK that can collect data from patients at various stages is advantageous in clinical trials and would also be highly useful for earlier detection. Early detection falls under one of the four key areas of the five-year Research Strategy developed by SRUK, and so we decided to explore the options to develop and run a nationally-unified Patient Registry, which could collate data from across the UK to create a single central database, beginning initially with the six specialist Scleroderma centres. To better understand how this might work, SRUK held a one-day Patient Registry Workshop in December 2019 at the King’s Fund, London. The workshop was attended by senior clinicians and patients from our community. It was an opportunity to hear from other charities and organisations involved in developing and running Patient Registries. Invited speakers included representatives from the Cystic Fibrosis Trust, Health Data Research UK and the University of Manchester.
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Given the clear advantages that could be gained from having a single, national Patient Registry, SRUK have formed a steering group committee, which will consider issues such as consent measures, adherence to ethical frameworks and what appropriate governance needs to be in place, as well as the resources and budget that would be required.
