Information for parents about CARIS
Why is information about children with congenital anomalies and rare diseases important?
This information is important to:
• help plan and develop services for the care of affected babies and children
• give health professionals information so they can advise you about having a child with a congenital anomaly or rare disease and the expected outcome
• improve our understanding of congenital anomalies and rare diseases and help research into their causes and treatment
• look at numbers and trends – for example to understand any changes in the number of babies born with congenital anomalies or if there are any patterns in where they are born
What information do you collect?
The information we collect includes:
• details about the mother and child including their names and dates of birth
• the mother’s address and postcode
• description of the congenital anomaly or rare disease
• details and results of any investigations carried out during pregnancy (for example,
ultrasound scan results)
How is information transferred?
A member of staff from the hospital who treats you or your child notifies the register when the anomaly is found. Any information reported can be improved or confirmed later by adding more details. Additional data is gained from hospital databases.
We include names so that information can be updated correctly and the same child is not counted several times.
Who sees the information?
There are strict rules controlling who is able to see personal information (including names and addresses). Only hospital staff treating you or your child and people who work for the register will be able to see this information.
Research studies and reports from the register do not contain anything to identify you or your child.
We will never give a name or full address to anyone except the doctors directly involved in your child’s care who have this information anyway.
Can I see the records on the register?
Yes – you have the right to ask for a copy of the information we have about you or your child.
Please tell a member of your health care team or contact CARIS directly if you would like to see any information.
Will the database be secure and confidential?
The information on the Register about you or your child is highly confidential. We use and keep it in a responsible way which respects your rights and privacy.
We work within the strict confidentiality and security policies of Public Health Wales and the Data Protection Act 2018.