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Types of Information Collected

The Register collects simple demographic and diagnostic information such as:

 

Method

A data collection form for each new case is completed by a clinician at the time of diagnosis and sent to the Register.  For confidential information (name, date of birth, postcode) to be included, consent must be obtained from the parents or persons themselves.  The confidential information helps to eliminate double entries of notifications to the Register, to recognise changes in diagnoses within the same person over time, and to assist with the manual checking of numbers received at the Register with numbers diagnosed at each centre.  At the end of each year, the major diagnostic and service centres are asked to review their records for any cases that have been missed.

 

Confidentiality

The Register is bound by a confidentiality protocol. The information kept on the register is strictly confidential and is only used for the purposes for which it was intended.

Any person or organisation requesting information from the Register must approach the Advisory Committee. Identifying information, such as names, are not released without consent from a parent or the individual with autism.