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Evaluating the target population-derived determinants for participating in a large scale, controlled clinical trial for assessing the effectiveness of treatment in normal pressure hydrocephalus

Main Study Investigator: Dr. Michael Cusimano
Co-Investigator: Bojan Garic
Contact Information:
Injury Prevention Research Office
St. Michael's Hospital,
2 Queen Street East, 10th floor
Room 10-05i
M5C 3G7
Phone Number: 416-864-5312
Fax Number: 416-864-5857

This study is being done in association with the Spina Bifida and Hydrocephalus Association of Ontario through which the advertisement for this study was made.
Thank you for your interest in participating in this study. You are being asked to participate in this study because you are a member of the Spina Bifida and Hydrocephalus Association of Ontario (SBHAO) and Normal Pressure Hydrocephalus is a health condition for which the SBHAO provides information and support. Participation is voluntary and you are free to withdraw or stop at any time without penalty.
You have to be 50 or over to participate in this study. You do not need to have normal pressure hydrocephalus.
If you agree to participate, just fill out the questionnaire and return it to the address indicated on the top of this document. If you don’t want to participate, just return the survey forms unfilled. If we don't receive the survey document from you within 2 weeks, we will follow up with you first via a follow-up reminder e-mail if it is available, and if not, via a follow-up reminder phone call.
Your participation will help us better understand what affects a patient’s decision to participate in randomized clinical trials which compare the effectiveness of treatment options for normal pressure hydrocephalus.
You have the choice to do the paper questionnaire or do it online via the SurveyMonkey link provided.


The questionnaire has 2 parts. The first part asks questions which help to describe your characteristics. Part 2 will provide you with an imaginary situation and ask you to answer questions based on this situation. This is the main part of the study. You have the choice to refuse to answer any question without providing a reason.
All information you provide in this study will be kept confidential. All information will be stored securely.
You will not directly benefit from this study. However, the data obtained from this study might reveal important factors which influence a person's willingness to participate in a clinical trial. Participation in clinical trials is crucial to arriving to efficient clinical guidelines and treatment regiments, and therefore by discovering how to maximize enrollment in such trials, the researchers are more likely to devise safer and more accurate approaches to treating patients.
The risks associated with this study are minimal. Some questions in the survey can make you feel emotional or stressed out. If this happens, you can contact the Injury Prevention Research Office; contact information is at the top of this document. In addition, although the study staff have precautions to keep your information confidential, this information may accidentally be viewed by others. If this happens, we will contact you immediately.
The results of this study will be prepared for publication in a peer reviewed journal but no information identifying you will be included.

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