InterRett Clinician Questionnaire

Telethon Institute for Child Health Research

Privacy Statement

All research projects undertaken by the Institute have been submitted to and approved by one or more State ethics committee(s). We obtain consent from study participants to supply us with any personal information.

We use the information we collect to:
a) carry out research projects looking for causes or ways to prevent particular childhood conditions
b) perform medical research and statistical analyses into the general health of populations to inform health providers and assist in government policy planning.

When we receive completed questionnaires or other information from you, we remove any identifying data such as your name, address and telephone number.

Identifying material is kept separately from your data. Both are stored in electronic and paper forms. Electronic data are kept on a secure network and protected by passwords to which only members of the Rett syndrome study team have access. Paper questionnaires are stored in locked cabinets in locked rooms in which Rett syndrome study members work.

Your information is shared between clinicians and researchers working on the project and to which you have consented. At any time you can request to review any information that you have given to us.

Acknowledgements

International Rett Syndrome Association
Telethon Institute for Child Health Research