Main goal:
- Ensure that child born with cleft lip and/or palate receives the best possible treatment and follow-up.
- Ensure that treatment given to cleft patients in Norway is unambiguous.
- Register whether the patients and parents/guardians feel they are well taken care of.
- Facilitate the comparison of treatment and outcomes with other cleft teams abroad.
- Facilitate research and quality improvement for cleft treatment in Norway.
- Provide data for annual reports.
The outcomes of treatment applies to appearance (scars and the development of facial structures), speech (palatal function and the amount of space in the throat), hearing (the recurrence of middle ear problems can lead to impaired hearing in child- and adulthood), occlusion of teeth, and psychosocial adaptation.
Criteria for data access
The data sources have different purposes and are regulated by different laws and regulations. In order to access information from the data sources, what you plan to use the information for must be in accordance with the purpose of the data source.
The types of approvals and documents you must submit to access information depend on what you are applying for, what you are going to use the information for and how you are going to process it. We therefore recommend that you take the time to familiarize yourself with the application guides before starting the application process:
Application guide for anonymous, aggregated data (statistical data)
Application guide for personally identifiable data
Apply for access to data
Applications for data access should be sent to the registry. The registry can offer advice/guidance to ensure quality, correct use, and interpretation of the information.