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MSA Trust

Congenital Anomaly Register and Information Service (CARIS)

You can find the information below written in Welsh here – CARIS – Welsh Translation

The MSA Trust shares data with the Congenital Anomaly Registration and Information Service (CARIS), which is part of Public Health Wales NHS Trust. CARIS collects information to identify how many people in Wales have a rare disease and what are their characteristics.

We have been working with the CARIS team since 2025. CARIS records people with congenital anomalies and rare diseases across Wales. For rare diseases, CARIS collects a small amount of information about each person and their diagnosis. This can then be linked to other datasets, like those that capture prescribing and hospital activity.

To make sure that the national registration data is as complete as possible for each rare disease, CARIS collects data from many data sources. Patient registers, like that provided by the MSA Trust, can play an important role in giving people the chance to make sure that CARIS is including them.

That is why when people sign up as part of the MSA Trust community, they can also choose to have their data shared with CARIS (people living in Wales only).

By sharing our data with CARIS we aim to better understand MSA. The data can help clinicians, researchers and charities to provide better support for those living with the condition.

The national CARIS register is also used for research and planning by helping to:

  • look at numbers and trends of people diagnosed with congenital anomalies and rare diseases
  • improve health, care and services for people with these conditions
  • support patients by providing information about their condition
  • give the NHS information to help it further improve the services it provides.

There are strict controls on who can see the information held by CARIS to protect your confidentiality. CARIS will never publish anything that would identify you.

If you would like to find out more about CARIS visit their website here – https://phw.nhs.wales/services-and-teams/caris/.

If you live in Wales and would like your information to be passed on to CARIS, please contact us and we will be happy to support you. You can opt-out at any time.