You are being asked to read this information sheet because
you may have been diagnosed, or have a child or loved one who was diagnosed, with
Multiple System Atrophy (MSA). Our registry is for patients or family members
that may be interested in participating in one of our research studies.
The registry will request basic contact and diagnosis
information. We will keep this information and use it to contact you in the
future if you are eligible for one of our research studies. If you are
eligible, we may reach out to you regarding participation.
The information you share will be stored at TGen
indefinitely. The researchers may contact you in the future regarding studies
that you may be eligible for. You do not need to take part in any research
study.
We will take many precautions to protect your family’s
privacy. The personally identifying information (such as name) that you share
with us will be stored in a secure location with limited study personnel
access.
There is no cost to participate in this registry and you and
your family will not be paid for sharing your information. There is no direct
benefit if you agree to participate. Your alternative is to not participate.
For questions, concerns, or complaints about the study, or
about a research-related problem, please contact the study coordinator at
602-343-8653. This research is being overseen by an Institutional Review Board
(IRB). An IRB is a group of people who perform independent review of research
studies. You may talk to them at (855) 818-2289, researchquestions@wcgirb.com
if you have questions, concerns or complaints about the study or about research
subjects’ rights, that are not being answered by the research team.
The study staff may share the records generated from this
research with the sponsor, regulatory agencies such as the US Food and Drug
Administration, Health and Human Services, and the IRB. This information is
shared so the research can be conducted and properly monitored. The people
receiving this information may not be required to protect it and your/your family
member’s information may be re-disclosed without your permission. If you do not
provide permission to use your/your family member’s information, they cannot be
in the study.
Your decision to participate or include your child/loved
one in this study is voluntary. You will not be penalized or lose benefits to
which you are otherwise entitled if you decide not to participate or if you
decide to stop participating. If you decide you would like us to remove your
information from our registry, please contact a study coordinator at
602-343-8653.
Your completion of this form will serve as your consent to
participate in this study registry. If you do not want to participate, please
do not submit the information on this form.