FAQs

It may take up to 4 weeks to finish all the study tasks. The number of times you need to come in will be based on how your procedures are scheduled. The study team will discuss this with you.

Each study activity takes a different amount of time to complete. A chart of how long each activity will take can be seen here.

No, it is not. The study will pay for testing that is required solely for SPeCTRuM. Any regular office visits or additional tests and procedures will be billed to you or your insurance company as they would normally be.

Please ask to speak to someone at your SPeCTRuM Research Site if you want more information about what you or your insurance will be expected to pay.

Not entirely. A portion of the study is completed online. However, you will need to visit a SPeCTRuM Research Site at least once to receive instructions, essential study equipment, and go through procedures similar to your usual CF and CFRD care.

You will have a laptop that can be used during your visit to do your questionnaires if you don’t want to use your phone or computer.

Yes, you can. If you live more than 200 miles away from the SPeCTRuM Research Site and will require a hotel and/or flight for your study visit, please tell the study team as soon as possible. The study team must get approval first. The study team at the closest SPeCTRuM Research Site to you or the Jaeb Center for Health Research may be able to book some of your travel for you. Please speak with your study team about it while scheduling your visit.

You can stop being in the study at any time. Please tell the study team if you don’t want to participate in or finish a test or procedure. It is up to you. You can get regular care like you normally would, but you will be asked to return any study supplies you may have.

Yes, there are. You cannot join the study if you are younger than 12 years old. Those who have had a transplant or are currently pregnant cannot join either. Both pregnancy and transplant can make diabetes look different. The goal of this study is to look at diabetes affected by CF. A complete list of who can participate is available on page 3 of the consent form.

Yes, you can. Only people who are pregnant during the study cannot join. This is because pregnancy can make diabetes look different. The goal of this study is to look at diabetes affected by CF.

This is a minimal risk study. The risks are like what you would have if you were not in the study. Some of these risks are:

• A possible loss of privacy or confidentiality
• Mild soreness or irritation from blood sample collection
• Some discomfort and trouble seeing that usually lasts less than about four hours after getting your eyes dilated.

You can read more about these risks on pages 7 to 9 of the consent form. Please discuss the risks with your study doctor or any other healthcare provider.

Please take a moment to read our Study Goals and Protocol in the About Us tab.

You may receive no direct benefit from being in the study. People who take part in this research study will add new insight and data that may help other people with CFRD

Your data will contribute to new knowledge that may help others living with CFRD. Your data will contribute to new knowledge that may help others living with CFRD. You will be asked to give your permission for your protected health information (PHI) to be shared from your doctors, clinics, and hospitals to the researchers doing this study. This is called giving your “Authorization”. The PHI is needed to do the study, so you will have to give your Authorization to be in the study. If you do not want to give Authorization, then you will not be able to be in the study. A full list of the specific types of information can be seen on page 14 of the consent form.

The Cystic Fibrosis Foundation’s (CFF) Patient Registry is an archive that holds data about the clinical care of people with CF. People who join the registry get a unique identification (ID) number to label their data. For the SPeCTRuM study, we will get your ID number if you already have one. Current and future studies or databases may use your registry ID to link to data from this study. Data added from this study to the registry may be used for current and future research. You can learn more about this on page 7 of the consent form.

Your information will be kept confidential and private as required by law. When the study is over, you have the right to see all of your study records. The National Institute of Health (NIH) has given us a Certificate of Confidentiality for this study. This adds special protection for study information that identifies you and allows us, in some cases, to refuse to give out information that could identify you without your consent. You can learn more about this on pages 14 and 15 of the consent form.

If you take part in the study, you will receive up to $300 for your time. You may choose not to receive payment for participating. A breakdown chart of each payment and more can be found on pages 12 and 13 of the consent form.

The study will pay for testing that is required solely for this study. You might have data fees if data fees apply for the following:

• Sending or receiving text messages.
• Your phone or computer to do study tasks like questionnaires.

If you would like reimbursement for your travel expenses, please talk with your study team about it while scheduling your visit. You can learn more about travel reimbursement on the bottom of page 12 of the consent form.

If you have concerns, suggestions, or additional questions about the study, there are two resources that can help. You can either contact the SPeCTRuM Research Site that is participating in the study or fill out the Contact form by clicking the button below. Please allow at least 5-10 business days for a response when emailing.

CF, CFRD, and more help resources are available on this website or through your SPeCTRuM Research Site. A list of clickable links to learn more about these organizations and resources can be found below.

• Annual Newsletter
• Programs & Assistance