Home > Services > Neuroscience > Conditions and Disorders > Post-Polio > Polio Survivor Registry

      Polio Survivor Registry

      Thank you very much for showing interest in our survey! We are interested in gathering information to support research specific to polio survivors. We will look at the age of polio survivors, their symptoms, and other traits common to polio survivors. We may also use the information you provide to develop new research. Our survey questions will take approximately 5-10 minutes to answer.

      Privacy Policy and Legal Disclaimer for Data Use in Research

      Polio Survivor Registry Privacy Policy

      Your privacy is important to us. We know that health is a personal and private subject, and we want you to feel comfortable providing your information for our survey. This privacy policy will tell you what information we want to collect, how we will protect your information, and how we will use the information that you may decide to give us.

      At no time will we sell, rent, or give your personal information or survey data to a third party except as explained below. Please read our privacy policy so that you will understand both our commitment to you and your privacy.

      Personal information we collect

      We will ask for information about yourself and any late effects of polio that you may have. Information we request may include your name, address, phone number, email, age, health conditions, etc. Required survey information is indicated by an asterisk (*). All other information is optional.

      How we will protect your information

      Memorial Medical Center will provide a secure, protected website for the survey. Access to the data on the survey Website will be restricted to the staff of the Post-Polio Program at Memorial Medical Center. These records may be viewed by people from Memorial Medical Center, government agencies including the Department of Defense, and authorized medical researchers as part of their duties. Confidentiality of the records will be protected to the extent possible under existing regulations and laws.

      How we use your information

      Once you complete the survey, your name and identifying information will be entered into our database. Memorial Medical Center does not release information gathered on the post-polio website which could identify you. It will not give your information to any unauthorized parties. We will contact you only if you indicate that you want to talk to us or want us to send you additional information.

      Your survey information is put together with the responses from hundreds of other people across the United States and from other countries. The information collected will be used to support research related to polio survivors.

      Participant's Rights

      You have been asked to participate in a research study. You have the right to:

      1. Be told the nature and purpose of the study.
      2. Be given an explanation of what will happen during the study and how you are expected to participate.
      3. Be given an explanation of the risks or discomforts that you may experience through participation.
      4. Be given an explanation of any other benefits you may expect from participation.
      5. Be told of other appropriate choices that may be better or worse than being in this study, and be told the risks and benefits of those other choices.
      6. Be given an opportunity to ask questions about the study, or about your participation; both before you agree to participate and during the course of the study.
      7. Be told that you may withdraw your consent and participation at any time with no affect on your services.
      8. Be told that you may refuse to answer nay question.
      9. Be free of pressure when considering whether to consent to and participate in the study.
      10. Be informed, upon request about the results of the study.
      11. Contact the IRB administrator (Memorial Medical Center, 1086 Franklin Street, Johnstown, PA 15905) or call 814-534-1639 should you have any questions about your rights as a research subject. An Institutional Review Board (IRB) is a group of medical and non-medical professionals who approve or disapprove research studies based on the risks and benefits to the subjects and society.

      Legal disclaimer

      Your medical condition is unique to you. If you have questions about your particular condition and what it will mean for you in the future, please consult your personal physician or contact Janet Goodard at (814) 269-5288 or via email at jgoodar@conemaugh.org, Coordinator of the Post-Polio Registry at Memorial Medical Center. If you have any questions about this form, the survey or to request a paper copy of the survey, please call toll-free 1-866-707-8424 or contact Janet Goodard.

      This study is being funded from a grant from the Department of Defense.

      I have read the above and have had the opportunity to ask questions. My questions have been discussed to my satisfaction. I understand and agree to enter my information into the Polio Survivor Registry. I understand this information will be used to answer research questions about polio.