Purpose: You are invited to participate in a research study ( The Use of Online Support Web sites by Parents of Children with Genetic Disorders) being conducted by Dr. Connie Varnhagen and Emily Handford of the Department of Psychology, University of Alberta. This study examines the use of online support Web sites by parents whose children suffer from genetic disorders. This study has three objectives. First, we are interested in why parents are using online support web sites. Second, we are interested in whether parents are finding what they are looking for on these sites. Third, we are interested in whether or not there is a connection between online and offline support.

Your participation: Your participation involves filling out an online questionnaire. The questionnaire will ask questions regarding your use of online support websites, social support online and offline and some basic demographics. It should take approximately 15-20 minutes to complete the questionnaire.

Your rights: Your decision to participate in this study is entirely voluntary and you may decide at any time to withdraw from the study. If you decide to withdraw, simply close your browser and no data will be collected. If you choose to participate, you may skip any items you do not wish to answer. Should you wish to withdraw your answers after submitting them, please e-mail Dr. Connie Varnhagen ( varn@ualberta.ca ) with the approximate time and date that you completed the questionnaire and we will remove your responses from the study.

All information collected will remain anonymous and confidential. Your data will be collected using a secure server and securely stored by Dr. Connie Varnhagen for a minimum of five years. Only researchers associated with the project will have access to the questionnaires. The results of this study may be presented at scholarly conferences, published in professional journals, or presented in class lectures. No individual results will be released; only grouped (aggregate) data will be presented.

Benefits and risks. This research can potentially contribute to the advancement of our understanding of how online support Web sites are helpful to the individuals visiting them. The questionnaire does address some sensitive issues and you may find some of the questions upsetting. Your safety is more important to us than our research. Please be sure you feel safe while completing the questionnaire and please do not answer any questions that upset you. If we discover that the questionnaire does have any risk to participants, we will post the risk on this discussion and remove the link to the questionnaire. If you should experience any adverse effects, please contact Dr. Connie Varnhagen and/or Dr. Thomas Johnson immediately.

Contact information. If you have any questions or comments on the study, or if you wish a clarification of rights as a research participant, you can contact Dr. Connie Varnhagen or Dr. Thomas Johnson at the phone number or address below. Please print out this page for reference.

Signatures. Please click below to indicate that you have read and understood the nature and purpose of the study. Your selection of the "Begin Survey" button indicates your willingness to participate in this study.