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Patient-oriented Consensus to define top 10 research priorities in Total Hip Arthroplasty – PACT Initiative

Please read the information below for more details about this project and to provide your consent to complete the survey.

Study Title: PAtient-oriented Consensus to define top 10 research priorities in Total Hip Arthroplasty – the PACT initiative

Principal Investigator: George Grammatopoulos, 613-737-8899 ext. 73032      
OHSN-REB Number: 20230698-01H

INTRODUCTION

You are being asked to participate because you are having or will be having a Total Hip Replacement (THR), you are a caregiver/family member of this person, or you are a healthcare professional in this field.

This goal of the study is to identify patient-centered research questions for future THR research.

Please note that this study is being conducted in English only; therefore, you must be comfortable communicating and reading in English in order to participate.

ARE THERE ANY CONFLICTS OF INTEREST?

There are no conflicts of interest to declare related to this study.

WHAT WILL HAPPEN DURING THIS STUDY?

Your participation in this study will require the completion of a survey about the importance of research questions relating to hip replacement surgery. You will be asked to rate the question in terms of importance to you on a scale of 1-9. You will also be asked background demographic information. This should take approximately 10-15 minutes of your time.

Additionally, a one-day, multidisciplinary, meeting will take place to further discuss the most important patient-oriented research questions for future THR research. Attendance at this meeting is optional, and participation in the survey does not mean you are required to attend the meeting as well.

After completing the survey below, you will be asked if you are also interested in attending a meeting at The Ottawa Hospital. If you are interested, you will be provided with the option to provide your contact information and a separate written consent form. The meeting will help prepare participants for the final post-meeting survey by:

1.      Providing an overview of current research and the top-rated research priorities identified in  the surveys

2.      Facilitating discussion groups to identify gaps in research, their potential implication, and future directions.

After the meeting, all participants will receive a final survey. In this last step, you will be asked to choose the top three research questions you believe should be the highest priority.

The information you provide is for research purposes only. Some of the survey questions are personal. You can choose not to answer questions if you wish.

VOLUNTARY PARTICIPATION AND WITHDRAWAL

You do not have to be in this study if you do not want to be. You can choose to end your participation in this research (called withdrawal) at any time without having to provide a reason.

The survey is anonymous, meaning  you can withdraw from participating at any time while completing the survey simply by closing your browser or not returning the hard-copy document. However, once the completed survey has been returned to the study team, it will not be possible to withdraw your information. Any information recorded before you withdraw will be used by the researchers for the purposes of the study, but no information will be collected after you withdraw your permission.

If you express interest in the meeting and future communication, we will be in contact with you. You may decide to withdraw at this time without having to provide a reason and have the option to remove your permission to contact for this specific study.

RISKS AND/OR BENEFITS

Participation involves minimal risk to you. You may not receive direct benefit from participating in this study.  We hope the information learned from this study will help inform future research questions that are important to patients and their caregivers.

PRIVACY/CONFIDENTIATLITY

Following completion of the survey, you will be given the option to input personal information (name, email, phone number) if you wish to be contacted for the meeting, further research and/or findings of our study.

The survey responses are anonymous which means that your answers will not be linked to you in any way.

Records identifying you at this centre will be kept confidential and, to the extent permitted by the applicable laws, will not be disclosed or made publicly available, except as described in this consent document. Authorized representatives of the following organizations may look at your original (identifiable or anonymous) research records at the site where these records are held, to check that the information collected for the study is correct and follows proper laws and guidelines.

·       The Ottawa Hospital Research Institute, the Sponsor of this study, who oversees the conduct of research at this location.

·       The Ottawa Health Science Network Research Ethics Board who oversees the ethical conduct of this study.

Information that is collected about you for the study (called study data) may also be sent to the organizations listed above.  Your name, address, email, or other information that may directly identify you will not be used. The records received by these organizations may contain your participant code, age (range), gender, and ethnicity.

This research study is collecting information on ethnicity as well as other characteristics of individuals because these characteristics may influence how people respond. Providing information on your race or ethnic origin is voluntary.

Communication via e-mail is not absolutely secure. We do not recommend that you communicate sensitive personal information via e-mail.

When the results of this study are published, your identity will remain confidential. It is expected that the information collected during this study will be used in analyses and will be published/ presented to the scientific community at meetings and in journals. Even though the risk of identifying you from the study data is very small, it can never be completely eliminated.

COST AND/OR PAYMENT

You will not be paid for participating in this survey, nor will there be any cost to you.

RIGHTS OF PARTICIPANTS

You have the right to be informed of the results of this study once the entire study is complete. If you would like to be informed of the results of this study, please let the research team know

Your rights to privacy are legally protected by federal and provincial laws that require safeguards to ensure that your privacy is respected.

QUESTIONS

If you have any questions about taking part in this study, you may contact Meaghan Dufresne, Clinical Research Coordinator at meadufresne@ohri.ca.

 If you have questions about your rights as a participant or about ethical issues related to this study, you can talk to someone who is not involved in the study at all. Please contact The Ottawa Health Science Network Research Ethics Board, Chairperson at 613-798-5555 extension 16719 or rebadministration@toh.ca. 

CONSENT

By clicking “Start Survey” and completing this survey your consent to participate is implied.

This survey is anonymous.

The record of your survey responses does not contain any identifying information about you, unless a specific survey question explicitly asked for it.

If you used an identifying access code to access this survey, please rest assured that this code will not be stored together with your responses. It is managed in a separate database and will only be updated to indicate whether you did (or did not) complete this survey. There is no way of matching identification access codes with survey responses.