It is my hope that the
prevalence of corn allergies will finally be revealed as a result of this
survey.
“Food allergy is a serious
health condition, but you can make a difference. Help speed the search for
better treatments by enrolling in the FARE Patient Registry.
Sign up and join a community
of more than 7,000 patients and families. We continue to add new surveys to
help you share your experiences and advance our understanding of food allergy.
Food allergy is a serious and growing public health issue. Approximately 15 million Americans have food allergies, including 1 in 13 children. Every three minutes, someone is taken to the emergency room for a food allergy reaction in the United States, and the underlying causes of food allergy and its rapid rise in recent years is still unknown.
Food allergy is a serious and growing public health issue. Approximately 15 million Americans have food allergies, including 1 in 13 children. Every three minutes, someone is taken to the emergency room for a food allergy reaction in the United States, and the underlying causes of food allergy and its rapid rise in recent years is still unknown.
FARE’s Patient Registry seeks
to answer these questions – and achieve so much more as we work to accelerate
research in the area of food allergy. The information you provide will help
foster new directions in research to better understand how food allergies
affect individual patients and what therapies can be developed to help them.
Your participation may help us discover new ways to improve patients’ lives and
connect individuals and families to new and innovative clinical trials
nationwide.
What are the potential benefits of
participating?
You may not benefit directly from
participating in the FARE Patient Registry. You may receive information that
you find helpful, such as information about the FARE Patient Registry study or
food allergies. The information collected by the FARE Patient Registry
may help researchers gain a better understanding of food allergies and may lead
to better diagnostic tests and treatments. By taking surveys you may
learn about FARE Patient Registry research findings, including how your answers
compare with those of other food allergy patients and new discoveries made by
FARE research programs.
What are the potential risks of participating?
There are no major risks associated with
participation in this study. None of the surveys or tools used in the
FARE Patient Registry study are interventional, invasive or experimental and
involve minimal risk as described hereafter. Although we will take every
precaution to protect your personal information, there is a risk that your
privacy may be compromised. In the unlikely situation where this happens, you
will be notified right away. Keeping the information from your survey in a secure
computer database will limit that risk, but does not eliminate it. FARE Patient
Registry staff are trained on how to work with human research
participants. If you share your login and password with others,
they may be able to access your account and self-reported survey answers.
There may be other risks that are currently unknown.
There may be risks of loss of privacy and
confidentiality if the PDF copy of this consent form is viewed and/or stored on
a personal electronic device (PED), especially if that PED is shared with other
users or is lost, hacked, or subject to a search warrant or subpoena.
If you change your mind and no longer want to
be part of the FARE Patient Registry, you may contact the FARE Patient Registry
Coordinator by e-mail at fare.coordinator@altavoice.com. Your
account will be deleted; however, data previously collected and de-identified
before you decided to withdraw from the FARE Patient Registry cannot be
retrieved. The FARE Patient registry cannot retract the use of
de-identified data from studies prior to the date you decided to opt-out.
In the event this study is terminated, FARE will maintain your participant data
according to the terms of our Privacy Statement.
You may decide to not participate or you may
leave the Registry at any time. Your decision will not result in any penalty or
loss of benefits to which you are entitled.
This Registry is for research purposes only.
The only alternative is to not participate in this Registry.
There is no cost to you for taking part in
this Registry.
You will be told about any new information
found during your participation in the Registry that may affect whether you
want to continue to take part.”
Diane H., Corn Allergy Advocate
Corn Allergy Advocacy/Resources
@CornAllergy911
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