https://phescreening.blog.gov.uk/2018/06/25/newborn-outcomes-in-sickle-cell-and-thalassaemia-screening/

Newborn outcomes in Sickle Cell and Thalassaemia screening

We have been collecting newborn outcomes data for the Sickle Cell and Thalassaemia (SCT) Screening Programme since 2010.

Things changed last year when the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) took over collecting it.

Read about the current newborn outcomes data collection process.

New system

To help improve the service further we are developing a new IT system that will improve:

  • the process of collecting and sharing data
  • patient safety, quality and completeness of data to evaluate the programme

What we've done so far

At the beginning we mapped out the needs of our users and their experiences in submitting data and tracking babies through the SCT pathway.

Once this was done we were able to put together the video below, which shows how we expect the new system to work.

While we were doing this we continued to talk to people and test our ideas with those who are going to use the new system.

Dr Moira Dick, a consultant pediatrician, was one of those who volunteered to support us in the project. She said:

I volunteered to support this project because I looked after children with sickle cell disease for many years in 2 London hospitals.

I was always concerned about the hand-over from screening to treatment services and the risk that babies might get 'lost' in the system either due to families moving or some administrative or clinical glitch.

This worry was confirmed when I was part of the team evaluating 5 years of the newborn screening programme.

Every area has different processes and often depends on personal contacts for things to work smoothly.

I am therefore very excited by the new electronic system.

It should not only provide a failsafe but also give laboratory staff and clinicians up to date information so babies can be started on treatment as early as possible.

What we're doing next

Before we fully roll out, we will run a limited version of the system with a small number of users.

Once we agree that this has gone well, we will invite a larger number of people to use it and continue to gather feedback to make changes.

We will also start to phase out the existing manual processes of submitting data. NCARDRS will continue to store the data once it has passed through the system.

How to get involved

If you are involved with this part of the SCT screening pathway we will be in touch about this project.

We will also continue to give updates via the screening blog.

If you have any questions you can contact the Screening Helpdesk.

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