There are no meaningful benefits to you from taking part in this research study. Others with neuromyelitis optica spectrum disorder may benefit in the future from what we learn in this study.
What other treatments or procedures are available for your condition?
You may receive infusions in any way that meets standard of care, whether at home or at an infusion center or hospital. This study is designed to observe your case if you are receiving your treatment at home.
How may we use and share your samples and health information for other research?
The information we collect in this study may help advance other research. If you join this study, we may remove all information that identifies you (for example, your name, medical record number, and date of birth) and use these de-identified data in other research. It won’t be possible to link the information back to you. Information and/or samples may be shared with investigators at our hospitals, at other academic institutions or at for-profit, commercial entities. You will not be asked to provide additional informed consent for these uses.
Can you still get medical care within Partners if you don’t take part in this research study, or if you stop taking part?
Yes. Your decision won’t change the medical care you get within Partners now or in the future. There will be no penalty, and you won’t lose any benefits you receive now or have a right to receive.
We will tell you if we learn new information that could make you change your mind about taking part in this research study.
What should you do if you want to stop taking part in the study?
If you take part in this research study, and want to drop out, you should tell us. We will make sure that you stop the study safely. We will also talk to you about follow-up care, if needed.
Also, it is possible that we will have to ask you to drop out of the study before you finish it. If this happens, we will tell you why. We will also help arrange other care for you, if needed.