Congenital Conditions and Rare Diseases Registration & Information Service for Scotland (CARDRISS)
How is information kept safe?
The information held by CARDRISS is private and confidential.
Public Health Scotland (PHS) holds the information securely and manages it in line with the law.
Only a small number of trained staff have access to the information in the register.
How will the information be used?
CARDRISS uses the information in the register to publish national statistics on congenital conditions.
Only statistical tables of numbers are published. Information which could identify individual babies is never published.
CARDRISS provides limited information on babies in the register to approved users following very controlled processes.
For example, information may be provided to international networks such as EUROCAT or to support research projects.
Each research project will be fully assessed by appropriate panels, such as the Public Benefit and Privacy Panel (PBPP), and will only be approved for use if the project meets PHS’s strict confidentiality and security requirements.
Learn more about the PBPP (external website).
Personal identifiers such as names are removed from this information.
CARDRISS provides more detailed information about babies in the register (including personal identifiers) back to local health services that are caring for the babies involved.
In this case, the local services would already hold detailed clinical information on these babies.
Why does PHS provide CARDRISS?
The purpose of PHS is set out in law and includes:
- collecting information on individuals’ health
- producing national health statistics
- using this information to protect and promote public health in Scotland
CARDRISS helps PHS to fulfil its purpose by providing information on, and promoting the health of, babies with congenital conditions.
The work of PHS, and CARDRISS, is in line with the law on equality, human rights, and data protection.
Under data protection law, all individuals have rights about how their personal data is used.
This includes the right to object to the processing of their personal data in certain circumstances.
Further information about how PHS, and CARDRISS, supports these rights is available. Find out more in our privacy notice.
For example, if a parent would like to see a copy of the information CARDRISS holds about their child, the privacy notice provides information on how to request this.
If you have further questions about how PHS and CARDRISS manage personal data, please contact our Data Protection Officer: email@example.com