Data Points Blog Feed

Transforming data into action for rare and congenital conditions

enquiries@nhsdigital.nhs.uk (NHS Digital) — Tue, 28 Oct 2025 13:42:13 GMT

Sarah and Steven celebrate 10 years of the National Congenital Conditions and Rare Disease Registration Service (NCARDRS).

This year the National Congenital Conditions and Rare Disease Registration Service (NCARDRS), part of NHS England’s the National Disease Registration Service (NDRS), celebrates 10 years of advancing understanding and care for people affected by congenital and rare conditions. Reflecting on the past decade, we have come so far in using data to make a tangible difference and achieved so much, yet there remains much more still to do.

Clinical trials changing lives: one researcher's story

enquiries@nhsdigital.nhs.uk (NHS Digital) — Mon, 19 May 2025 10:14:35 GMT

Professor Matt Sydes, Head of Data-Driven Clinical Trials at NHS England, describes how his personal and professional lives collided when a family member was affected by a rare cancer.

As a statistician and a trialist, I've been involved with researching many different diseases and conditions over the years. I’ve planned and run studies, analysed data, and interpreted and disseminated findings from clinical trials to support the development of new treatments and interventions, all to help doctors and patients make the best healthcare decisions that improve and extend lives.

Tracing NHS data back to the source

enquiries@nhsdigital.nhs.uk (NHS Digital) — Tue, 01 Oct 2024 09:50:22 GMT

Professor Matt Sydes explains how we’re semi-automating the data provenance process to ease the admin burden on researchers and speed up clinical trials.

A hard truth is that we need to improve the delivery of clinical trials. They are often large and time consuming for good reason. We need reliable findings and must protect against false positives and false negatives.

If patients are already expected to do well or the treatment is only expected to make a modest improvement or we need to have greater certainty of the results, the trial will need to be larger and longer. And more time inevitably means more money.

From days to minutes: How NHS England Secure Data Environment is accelerating healthcare research

enquiries@nhsdigital.nhs.uk (NHS Digital) — Fri, 26 Jul 2024 15:23:31 GMT

Adam Hollings and Humaira Hussein talk about how NHS England Secure Data Environment service is powering life-saving research and treatments across the UK.

NHS England Secure Data Environment service is part of the Secure Data Environment network which is powering life-saving research and treatments across the UK.

Putting people and partnership at the centre of clinical research

enquiries@nhsdigital.nhs.uk (Heather Pinches) — Mon, 07 Jul 2025 13:32:45 GMT

In March 2024, the Westminster Health Forum policy conference on "Next steps for clinical research in the UK" brought together stakeholders from across the research industry. Heather Pinches shares her insights from the event.

I was delighted to be invited to represent NHS DigiTrials at the Westminster Health Forum policy conference. The event was chaired by The Rt Hon Baroness Neville-Jones DCMG, setting the stage for discussions on priorities for diversity, trust, transparency and public involvement in clinical trials.

One year on: The latest on our Secure Data Environment

enquiries@nhsdigital.nhs.uk (NHS Digital) — Thu, 28 Nov 2024 12:36:01 GMT

Liz Gaffney, Head of NHS England's Secure Data Environment, reflects on the developments of the service one year on.

In January, Michael Chapman blogged about our ambitious plans for the NHS England Secure Data Environment (SDE), starting with migrating customers to the service, testing its capabilities and processes, and then scaling up the service to handle wider use.

Recruitment success puts spotlight on what we can do better

enquiries@nhsdigital.nhs.uk (Heather Pinches) — Mon, 07 Jul 2025 13:34:12 GMT

Our data-driven clinical trials service, NHS DigiTrials, is changing what is possible for researchers but there’s more to do, says our Head of Clinical Trials.

We’re seeing numbers coming out of the NHS DigiTrials’ recruitment service that would not have seemed possible 2 years ago.

Clinical trials get faster

enquiries@nhsdigital.nhs.uk (NHS Digital) — Mon, 21 Oct 2024 14:47:26 GMT

For International Clinical Trials Day, James Gray, NHS DigiTrials Service Delivery Manager, talks about the new Feasibility Self-Service tool that drastically cuts the time it takes researchers to find out if there are enough potential participants for their clinical trial.

“In the time it takes to make a coffee.”

That was the challenge we set ourselves early in the creation of the NHS DigiTrials Feasibility Self-Service tool. And it was a big one: it meant giving users the ability to securely interrogate national datasets containing millions and millions of records in less than 5 minutes.

A new way to find patients

enquiries@nhsdigital.nhs.uk (Darren Hickling) — Thu, 08 Jan 2026 14:11:36 GMT

Darren Hickling describes NHS Digital’s role in developing a platform to identify the highest risk COVID-19 patients so they could receive life-saving antiviral treatments.

As COVID-19 emerged and treatment options were limited, pharmaceutical companies began researching and developing new antibody and antiviral treatments to reduce viral replication or alleviate symptoms in immunocompromised people.

One giant step for secure data access

enquiries@nhsdigital.nhs.uk (NHS Digital) — Thu, 06 Jun 2024 07:54:04 GMT

Michael Chapman, Director of Research and Clinical Trials at NHS Digital, talks about our new Secure Data Environment and explains how it is making research into life-saving treatments easier and faster.

At the outset of the COVID-19 pandemic, we built the Trusted Research Environment (TRE) service for England to enable researchers from the NHS, government, academia and industry to contribute to our collective response to the disease.

Our TRE service proved invaluable in understanding the impact of COVID-19 and the efficacy of treatments, but it wasn’t scalable or flexible enough for the wider community of researchers who we want to support.