A collaborative study between the University of Otago,
the University of California, and Stanford University
Frequently Asked Questions
How did I get selected to be in the study?
If you have been contacted inviting you to participate in the study then you were randomly selected from the records of the Rotorua General Practitioner Group. We will be recruiting 1800 participants over the course of 3 years.
Your participation in the study is entirely voluntary and there are absolutely no penalties if you should decide not to participate. The standard of your medical care will remain exactly the same as it was before.
Can I volunteer to be in the study?
No, we are not taking volunteers for this study. All participants are being selected using random selection procedures. We will contact everyone who is selected. If we accepted volunteers then we could end up with a biased sample of participants, and our final results would be unscientific and uninterpretable.
Who are the people being recruited?
We are recruiting both males and females, aged 18-65, living in Rotorua. However, we can not include in the study any of the following people:
- * People who cannot speak and write English.
- * People who have disabilities that prevent them from visiting our study facility.
- * People who have been blind from birth, or became blind in childhood or through trauma.
- * Women who report that they are pregnant.
Could I be harmed by the test procedures?
We do not see any likelihood of harm that could come to you as a result of our procedures. All of the study procedures are well-established test methods, involving little if any discomfort, and none are in any way experimental procedures. For the most part they are like tests that might be carried out at your doctor or your optometrist?s office.
The only risk that we can conceive of is a possible breach of confidentiality of study information. However, we are taking extensive precautions to ensure that this will not happen, including electronic password protection of databases and encryption of information collected so that it is unreadable by anyone without the encryption key.
Will the information obtained about me be kept confidential?
The information we obtain about you will be stored only in an electronic database that does not include your name. Once you have enrolled in the study then you will be assigned an individual code number that will be the only identifier in the study database. No-one other than the Principal Investigators in New Zealand (Prof Crane) and the United States (Prof Bates) will have access to the key that links the code number to your name. It would only be if we needed to contact you again that we would need to access that key.
Although we plan to publish the results of our study and will present them at scientific meetings, all results will be presented in a statistical format and neither you nor any of the participants will be identified in any way.
After the study is finished (about the end of 2011) we plan to retain the data we collected from study participants. The reason we intend to keep it is that it may be useful to do another study in the future and to compare the results of that with this study, or we may decide to do a follow-up study. If we decided to do a follow-up study then we would contact you again and you would have the same right not to participate if you preferred not to do so. However long we keep the data, it will still be maintained in a very secure place, identified only by code numbers for study participants.
Can I withdraw from the study if I change my mind?
Yes, if at any time, even after you have gone through the interview and test procedures, you decide to withdraw from the study then you may do so. Or if you decide to withdraw only your saliva sample, but otherwise remain in the study you may do so. If you do that then we will destroy your saliva sample and it will not be analyzed.
All you have to do is contact the Study Director, Melinda Sando (phone: 04 806 1602 or email melinda.sando@otago.ac.nz) and advise what you wish to do. You do not need to provide a reason. If you do that then the data that have been collected on you will be deleted entirely from the database. There will be absolutely no penalty if you decide to withdraw.
Will I get paid for participating?
Once study procedures have been completed you will be given a petrol voucher, book token or supermarket voucher to the value of $50 as some compensation for the time you have donated to the study. We will also pay for a return taxi fare to and from your house, so that you do not need to drive while the pupils of your eyes are dilated.
Will there be any financial charges to me for participating?
No, there will be absolutely no charges to you for participating.
After completing these procedures, will there be anything else I have to do?
If you are one of the first 600 participants we will contact you again in about 3 years time to ask if you would be willing again to have your lung function retested, as we are interested in changes over time. This procedure will take about 15 minutes and we would come to your home (or anywhere else that was convenient for you) to do the procedure. Other than a very short questionnaire and confirming your height and weight, we will not be repeating the other procedures. Again you would be free not to participate if that was what you preferred at the time.