The NAR works with two separate databases (computer systems in which information is stored). One database contains all personal information and the other the answers from the questionnaires.
Separate databases
The NAR works with two separate databases (computer systems in which information is stored):
Database 1: personal information
The first database contains your personal information, such as your name, date of birth and e-mail address. This database is on a computer that is completely separate from the outside world and not connected to the internet or any other network. This data is used by a small group of people for administrative purposes. For example, to send invitations for research, to keep track of whether questionnaires are returned and to keep track of relationships between participants, such as brother-sister or parent-child. The researchers do not have access to this data and can therefore never simply link the results of a questionnaire to your personal contact details.
Database 2: questionnaire answers
The second database contains the answers from the questionnaires that participants complete. These answers are on a different computer than your personal information. The answers are stored pseudonymously. This means that all personal information in the first database is replaced by a number in this database. Only the data-managers of the Netherlands Autism Register know which number you have.
Not traceable
Information from the questionnaires is thus stored separately from names and email addresses. The researchers can see the answers from the questionnaires, but cannot see or infer who completed the questionnaire. Personal information can never be identified in the publications of the Netherlands Autism Register.
