Consent to Survey Participation

INTRODUCTION
You are being asked to take part in a type of medical research called an observational registry. The purpose of the information on this page is to help you decide if you want to take part in this survey.

Who is conducting this survey?
This survey is being carried out under the sponsorship of Aultman Hospital Department of Obstetrics and Gynecology in Canton, Ohio.  The lead investigators are Sara Lemin MD and Shea Soberdash DO.

What is the purpose of this survey?
You are being asked to take part in this survey because you have had a pregnancy affected by arthrogryposis multiplex congenita (AMC). The purpose of this survey is to gather information about the care and advice you received during that pregnancy.  This is a comprehensive survey that will take approximately 20 minutes to complete.  

Why is this research survey being done?
AMC is a rare condition and many health care providers are not familiar with caring for affected pregnancies. Our hope is that our analysis will raise awareness of AMC among obstetricians, radiologists, sonographers, pediatricians, specialists, and therapists.  In doing so, we hope to educate providers to enable them to give accurate recommendations to parents and to develop protocols and guidelines for the standardization of care.

How is my information being used?
We will not be collecting any personal identifying information such as name, address, email, or medical record number.  Your responses to this survey will be anonymous and will be reported collectively.  Please feel free to be as candid as you would like in your answers.

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* 1. I am the parent of a child with Arthrogryposis Multiplex Congenita.  I have read and understand the above information and choose to participate in the survey.

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* 2. I am currently 18 years of age or older.

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