Q: Other than providing data to researchers to fuel breakthroughs, how does my participation in one of these networks benefit me in the short term?
A: An added benefit of donating your data to research is that the process enables you to get organized and take control of your health and disease. By tracking and recording your information in an organized way, you can become more empowered and feel more confident in the decisions that you make. Another perk of being a part of a consortia is that you gain access to leading researchers who are at the forefront of the field.
A: To participate, you should have gone through an informed consent process, in which you reviewed a document (possibly with a study coordinator) that explained the risks, possible benefits, and requirements for participation.
After the consent process, you likely answered many questions about your Nephrotic Syndrome history, and you may have even given a blood sample! Sometimes, you answer these questions at the end of your normal appointment, or you might go to an appointment just to answer these questions.
Q: I’ll participate, but I want to remain anonymous. Is that possible?
A: Privacy is extremely important, and many steps are taken to ensure that your privacy is protected. All research studies have specific sets of rules that are followed to protect your privacy, and these rules are set forth and reviewed by an Institutional (or Independent) Review Board (IRB). You can learn more about IRBs here, and you can also talk to the study coordinator to learn exactly what steps they will take to ensure your privacy.
A: All efforts are made to ensure that it is relatively easy for patients to participate in these opportunities. Many times, enrolling in a consortia can be part of your regular appointment- adding 15 -30 minutes to your normal appointments. Sometimes, you can answer questions over the phone to fulfill your commitment.
Some opportunities require minimal input from you after the consent process, such as NACI.
Other opportunities can be completed on your own time, such as the NKN.
Whatever your time restriction is, there is definitely an opportunity for you to contribute to finding better treatments and cures.
Q: Is there a cost to participate?
A: There is no cost- researchers just need your participation!
Q: Why is it important for me to do this?
A: Nephrotic Syndrome is very complicated, and is different for every person. Researchers need to have the most complete collection of information possible to be able to draw accurate conclusions that will benefit the patient community.
Participating in one of these opportunities will fuel breakthroughs in the research process that can ultimately lead to better treatments or cures.