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Hi! Thank you for visiting our web page. The MPGN Database is a research project
conducted by a team of nurses, informatics specialists, and a pediatric
nephrologist at The University of Iowa. The purpose of this database is
to collect information from individuals with MPGN. Hopefully this information
will give us clues as to a cause, cure, and the best possible treatments
for people with MPGN. You are a valuable link in finding answers to this
disease.
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Frequently Asked Questions
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Who can participate in this study?
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If you, or your child or a child you are the guardian of who is younger than
18 years of age has MPGN, you can fill out the questionnaire. If your child
has MPGN and is over 18 years of age, your child may participate by completing
the consent form and the questionnaire.
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How do I fill out the questionnaire?
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You can complete the questionnaire either by paper or directly on the web page.
If you would like us to send you a paper copy of the questionnaire, you
can contact us at email:
mpgn@uiowa.edu,
Fax: 319-335-9990 , or phone us at 319-335-7086.
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If you chose to access the questionnaire through the website, you will first
need to print out, sign, and mail to us your consent to participate in the
study. Once your consent is received, you will be sent a password that will
allow you to complete the questionnaire on line.
Click here to download the consent form.
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Will my name appear in any report of this study?
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NO. Your name will not appear in any reports of this study. Only the members
of the research team will have access to your name and answers.
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What do I gain from this?
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Hopefully the results of this study will lead to better knowledge of how to treat
MPGN. This information will be made available to doctors and other professionals
through publication of group information in professional journals.
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Who do I talk to if I have a question about the database?
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You can email us at
mpgn@uiowa.edu
or call us at 319-335-7086 with your questions.
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Will there be any follow up?
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We will keep participants aware of any findings by updates on this web site
or by mailing information to you, if you request it.
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Thank you for taking the time to fill out the questionnaire. It's long. If you
want to fill it out in different sittings, that's fine. Be sure to fill
out your name each time. Or you can download the questionnaire and FAX the
completed form to Ann Marie McCarthy, RN, PhD at 319-335-9990 or mail it
to Ann Marie McCarthy, RN, PhD, Associate Professor, College of Nursing,
The University of Iowa, Iowa City, IA 52242.
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The Team of Researchers
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Ann Marie McCarthy, PhD, RN
Associate Professor
College of Nursing, NB 430
The University of Iowa
Iowa City, IA 52242
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Craig Porter, MD
Associate Professor
Pediatric Nephrology
The University of Iowa
Iowa City, Iowa 52242
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Connie Delaney, PhD, RN
College of Nursing,
The University of Iowa
Iowa City, Iowa 52242
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Lynne Lanning, RN, JD
11 Cherry Lane NE
Iowa City, IA 52240
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Grant Information
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This information is supported by the National Kidney Foundation of Iowa.
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How can I participate in other research projects on MPGN?
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If other research projects on MPGN are brought to our attention, we will post
information about participation on this website, and you can decide if you
wish to participate.
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Links dealing with MPGN
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Kidneeds (www.medicine.uiowa.edu/kidneeds/)
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