Diabetes Clinical Research Study FAQ

Have you considered volunteering for a clinical research study, but were unsure if it was something you could do comfortably and confidently? The following are some questions frequently asked by potential participants.

If you have other questions you’d like to have answered, please contact us at 1-800-888-4187 or diabetes@benaroyaresearch.org.

Table of Contents

Q. I don’t have much free time in my schedule and I travel often. Can I still participate in research?

Q. Do I have to be a Virginia Mason patient to participate?

Q. How much does it cost to participate in a study?

Q. I’m nervous about taking an experimental medication. Who is making sure I’m safe?

Q. Do participants have to come to Seattle? What if I have a family member who wants to participate with me, but he/she lives across the country?

Q. I’d like to have family members screened for their risk of developing diabetes, but I’m afraid our insurance company might find out about the results. Who will have access to our test results?

Q. How can I find out which studies are looking for participants?

 

Q. I don’t have much free time in my schedule and I travel often. Can I still participate in research?

A. Absolutely! Although some studies may involve keeping appointments over many weeks or even years, some studies require only one visit. Study coordinators make it a priority to talk about study time commitments before you agree to participate.

Q. Do I have to be a Virginia Mason patient to participate?

A. No, we welcome anyone from the Pacific Northwest who is interested in our studies.

Q. How much does it cost to participate in a study?

A. Typically, costs associated with the study, such as study medication, physical exams and education are paid by the study. Sometimes the study covers travel expenses and a small stipend may be available for your time and effort. However, the costs that are covered can vary by study. The study coordinator will answer any questions about what is covered during the informed consent process.

Q. I’m nervous about taking an experimental medication. Who is making sure I’m safe?

A. A number of safeguards are in place to ensure a participant’s safety. Federal regulations require that all clinical research involving human participants must be reviewed and approved by an independent Institutional Review Board prior to the start of a study, and then periodically throughout the study. All known risks will be explained to you during the informed consent process, before you make a decision to participate. Your health is closely monitored, and if necessary, treatment will be modified or suspended.

Q. Do participants have to come to Seattle? What if I have a family member who wants to participate with me, but he/she lives across the country?

A. Travel requirements will vary depending upon the study. Some studies require that you travel to Seattle and travel expenses may be paid by the study. Other studies do not require that you come to Seattle. We coordinate our studies with hospitals and clinics in the five Pacific Northwest states, and we can connect you with other research sites throughout North America. More information on sites involved in Type 1 Diabetes TrialNet screening may be found under Our Northwest Affiliates.

Q. I’d like to have family members screened for their risk of developing diabetes, but I’m afraid our insurance company might find out about the results. Who will have access to our test results?

A. Maintaining your privacy is of the highest priority. Only a limited number of people involved in a particular study will have access to your information. All of these individuals receive careful training about the importance of privacy and the penalties for compromising your privacy are severe. In addition, your personal identity will not be revealed in any publication of study results. Furthermore, your research information does not become part of your medical record and is not shared with your insurance company. Details about how a particular study’s information is handled will be discussed during the informed consent process.

Q. How can I find out which studies are looking for participants?

A. A summary of open studies may be found under Find a Diabetes Research Study. We also maintain a registry of individuals interested in learning more about diabetes research studies. The database is confidential and only used to keep you up-to-date on studies. If you choose to be on the registry and are eligible for a study, we will contact you to give you more information.

Additionally, the National Institutes of Health sponsors a website with a list of many clinical trials, clinicaltrials.gov.

Do you have other questions you’d like to have answered? Please contact us at 1-800-888-4187 or diabetes@benaroyaresearch.org.