NEPTUNE

Information for Patients and Families

Frequently Asked Questions for NEPTUNE Participants

Q: What is the proper way to do a 24-hour urine collection?

A: Please download our instructions for urine collection.

Q: If I agree to participate in NEPTUNE, will I have to see my doctor more often?

A: Your NEPTUNE Research Coordinator will work with you to try to schedule the study visits at the same time as your regularly scheduled doctor's visit. However, due to the follow-up periods, particularly in Year 1, you may need to come to the hospital/institution an extra time or two, but you will not need to see your doctor for study visits.

Q: What else do I have to do to be in NEPTUNE besides my regular doctor's orders?

A: We would like extra blood and urine at every visit, and sometimes we are going to request you to save your urine for 24-hours and bring it to us. Participating in NEPTUNE will not require any further treatment or obligations for your health care. The research is voluntary, but as a participant we would like you to complete all study visits and sample collections.

Q: Will participating make my Dr. treat me differently?

A: Your participation in NEPTUNE will not change any care you would normally receive for your kidney disease.

Q: What if I miss my NEPTUNE appointment?

A: Please contact your local study coordinator to reschedule. We do have time periods that we would like to complete the visits within, and he/she will work with you to schedule a new visit.

Q: How do I contact the NEPTUNE coordinator at my site?

A: Coordinators for all our sites can be found in Participating Clinical Centers, or on The Nephrotic Syndrome Study Network (NEPTUNE) Longitudinal Cohort study page.

Q: Once I'm in the study, and something changes, can I still be in the study?

A: Please discuss this with your coordinator. If your kidney disease changes, or is not FSGS/MCD or MN, we would like to continue to follow you and continue to gather samples. If your kidney disease goes into recession, we will still like to follow you and get all the samples. If you move but would still be interested to participate, we will work with you.

Q: What if I/my family want(s) a second opinion after my biopsy?

A: This is your right and you are welcome to seek second opinions. It does not have to be a NEPTUNE doctor or related to NEPTUNE. A second opinion may or may not be covered by your medical insurance. Check with your medical insurer regarding coverage for second opinions.

Q: Will it cost anything to be in NEPTUNE?

A: You will not be billed for any samples collected for the NEPTUNE study. All samples will be processed by study staff and no clinical tests will be performed on any samples that could be billed to you or your insurance.



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