What does the NTR do with the collected data?
The data collected with our questionnaires are very valuable to our researchers and are sometimes used at a later date to select smaller groups from the register for participation in more specific research. This research can be in the form of different questionnaires, but it is also possible that we want to see the twins, their siblings and/or parents in person to obtain information that cannot be obtained using a questionnaire. The NTR performs for example research on the onset of diabetes in collaboration with the VU Medical Centre, and we visit participants at home for research on blood pressure and cognitive skills.
Please let us know about any change of address or home situation so the NTR can stay in touch. This can be done via this website, or you can call us or send us an email.
All the research done by the Dutch Twin Register is assessed beforehand by the Medical Ethical Committee (METc) of the VU Medical Centre or the Central Committee on Research Involving Human Subjects. The NTR is also registered with the Data Protection Authority (m1412317). The method of data handling and preservation came about after consultation with the METc.
In short the NTR works with three separate databases:
The database with names and addresses is located on a computer that is completely separate from the outside world. These data are used by a small group of people for administrative purposes only.
The second database, which is completely separate from the first, contains information from questionnaires completed by participants. The third database contains information derived from biological samples. The data in these three databases are stored in meaningless numbers, each database uses different numbers. In addition there are a number of smaller databases containing information from subprojects (eg MRI studies). Biological samples are stored in multiple locations. This storage is done under numbers that cannot be traced back to participants.
On our website you can find an article that offers more background information on how we handle our data: Design and Implementation of a twin-family database for behavior genetics and genomics studies