Information Form

 
 3% of survey complete.
INVESTIGATORS:
Dr Simon Ghaly, consultant Gastroenterologist, St Vincent’s Hospital
(02) 8382 2061 
Mr Christian Inglis, medical student at University of Notre Dame Sydney

INTRODUCTION:
You are invited to take part in a research study into your travel experience with IBD. This Participant Information Sheet will tell you about what is involved in the study and help you decide whether or not you wish to take part.  Please read this information carefully.  If there is anything you do not understand or if you feel you need more information about anything, please ask.  Before you make a decision, please feel free to talk things over with a relative, a friend or your own doctor.

WHY HAVE I BEEN ASKED TO TAKE PART?
You have been invited to take part in this research because you are over 18 years of age, are currently living in Australia, and have been diagnosed with Inflammatory Bowel Disease (IBD), either CD or UC.

WHAT IS THE PURPOSE OF THIS RESEARCH?
The aim of the study is to understand the barriers associated with travelling with IBD. Of the few studies that have been published around this topic, the known barriers to travelling include the need for vaccines, insurance coverage, and need for continued medical treatment; however no clinical guidelines currently exist regarding travel advice. It is hoped that through this study, which is the first in Australia to investigate travel behaviours and IBD, that guidelines can be developed that will help IBD health professionals to give specific advice regarding safe travel.

DO I HAVE TO TAKE PART IN THE STUDY?
Taking part in any research is entirely voluntary.  If you do decide to take part you can withdraw at any time without having to give a reason. 

WHAT WILL HAPPEN TO ME IF I TAKE PART?
You will be invited to complete this one-time survey with 53 questions that will take approximately 15-20 minutes to complete. 

The information to be collected in the survey will be general information about you (e.g., age, disease type, medications), and about your travel experiences with IBD.

WHAT ARE THE POSSIBLE BENEFITS OF TAKING PART?
As research becomes disseminated, online resources such as support groups and health forums will hopefully include realistic, and specific travel advice for patients with IBD. Information regarding travel advice for health professionals is scarce in IBD, and all forms of support groups are also lacking in appropriate information. This research will help patients receive the appropriate information, as the barriers to travelling with IBD and experiences are unknown.

WHAT ARE THE RISKS OF TAKING PART?
Answering some questions regarding disease diagnosis, status, and barriers associated with travelling may create emotional reactions in some participants. If this causes you any anxiety, we advise you to contact your GP or Gastroenterologist for support.
CONFIDENTIALITY
A report of this study may be submitted for publication but individual participants will not be identifiable. All paper copies of surveys will be shredded once the research is completed. All data from online surveys and paper surveys will be entered to a password-protected hospital computer backed up to the server. Statistical analyses will be ran on the de-identified data for publication. 

FURTHER INFORMATION
If you would like to know more at any stage, please feel free to contact Melissa on 02 9767 5563. 

This study has been approved by the Human Research Ethics Committee - CRGH of the Sydney Local Health District. If you have any concerns or complaints about the conduct of the research study, you may contact the Executive Officer of the Ethics Committee, on (02) 9767 5622.

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