WHAT IS THIS FORM?
This form is called a Consent Form. This consent form will give you the information you will need to understand why this study is being done and why you are being invited to participate. It will also describe what you will be asked to do as a participant, and any known risks, inconveniences and discomforts that you may have while participating. We encourage you to take some time to consider this information before we start.
WHO IS ELIGIBLE TO PARTICIPATE?
To be eligible for this study, you must have been diagnosed with either cerebellar ataxia or Parkinson’s disease. Moreover, you must be above 18 years of age.
WHAT IS THE PURPOSE OF THIS STUDY?
The purpose of this research study is to investigate the relationship between sleep quality and disease related changes in cognitive and affective functioning experienced by individuals with cerebellar ataxia and Parkinson’s disease.
WHERE WILL THE STUDY TAKE PLACE AND HOW LONG WILL IT LAST?
Since this is an online survey, it can be completed in a place that is convenient to you. It will approximately take 60 minutes to complete.
WHAT WILL I BE ASKED TO DO?
This survey includes questionnaires, with each questionnaire having certain specific instructions that will be indicated as you proceed through the survey. The questionnaires will be about your general sleep habits, mood, cognitive functioning and daily activities. The questionnaires are of different lengths with different question types, and you will be asked to select the best possible answer for each. You may skip ANY questions you feel uncomfortable answering.
WHAT ARE MY BENEFITS OF BEING IN THIS STUDY?
There are no direct benefits to you from taking part in this study. However, we hope that your participation in the study may help us understand whether sleep disturbances due to ataxia or Parkinson’s disease are associated with cognitive and affective functioning.
WHAT ARE MY RISKS OF BEING IN THIS STUDY?
There are no known risks associated with the survey study. However, you may experience boredom, fatigue or distress answering the questions. You may therefore choose to save your work and return to it at a later time, or you may end your participation and exit the survey entirely if you wish to do so.
HOW WILL MY PERSONAL INFORMATION BE PROTECTED?
The following will be used to protect the confidentiality of your information. All electronic files will be maintained in a secure, password-protected computer. These electronic files will not have your name or personal information on them. Rather, we will give them a code. We expect the data collection to last approximately 2 years. Data will be destroyed within 5 years after any resulting publication.
WILL I RECEIVE ANY PAYMENT FOR TAKING PART IN THE STUDY?
You will not be receiving any payment for completing this survey.