PROWHD Research Registry

Hello! You are about to fill out a brief survey for the Program for Research on Women's Health and Disability (PROWHD) Research Registry. The purpose of the registry is to connect with women who are interested in being contacted for participation in future research studies focusing on Women's Health and Disability.

You will be asked questions about your address, phone number and to describe your disability. You will also be asked questions about your availability and the type of research you'd be willing to participate in. Filling out this survey is completely voluntary and will not penalize you in anyway if you decide not to participate.

The next page will contain the consent form, with information explaining the study in detail and will ask you to select whether you agree to participate in the study or not. If you do not select an option or if you select "I decline to participate in the registry" then you will not see any questions and will be directed to the end page. If you have any questions or problems filling out the survey, please contact us at whdregistry@umich.edu

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Women's Health and Disability Registry
Investigator: Claire Z. Kalpakjian, PhD, MS

You may be eligible to take part in a research registry. This form gives you important information about the registry and its purpose.

We are doing several new research studies about the health of women with physical disabilities. To help us reach out to as many women with disabilities as we can, we are creating a large database or "registry" of women who are interested in being in future studies.

To be on this list, you have to be at least 18 years old and must have a physical disability. Physical disability is defined as having some limitation in your mobility. It can be for any reason, like being injured, getting sick or being born with a disability.

If you are interested joining this Registry to be contacted about future studies, we will get some basic information from you, like a brief description of your disability and how you got your disability. We will also ask you about yourself like how old you are. We will also get information like your address, email and phone number and your preferences for how you would like us to contact you. Then we'll put you in a database of other women like yourself and as new studies that you may be eligible for come up, we will contact you. While we cannot guarantee you will be eligible for every future study, it is likely you will be called at least one time to see if you are interested in a new study.

The risks in this study are related to privacy and confidentiality. Your name will be stored in a secure, electronic database that is password protected and on University of Michigan computers. Only the research team led by Dr. Claire Kalpakjian will have access to your information. Your information will not be shared with anyone outside of her team unless you give us your permission ahead of time.

Being in the Registry is completely voluntary. You can choose not to answer any question you don't want to. If we contact you about being in a study, you don't have to say yes if you don't want to. If you say no to a specific study, you can stay in the Registry as long as you want to. And you can take yourself off the list any time you want to without any penalty.

There may be no direct benefits to you for being in this Registry. Being on the Registry will make it easy for researchers to reach you about new studies and give you an opportunity to participate that may have direct benefits to you. While being in some studies may not directly benefit you, your participation may help other women with disabilities. And we will send out periodical newsletters and updates on research study findings to women in the Registry to keep them up to date. Being in the Registry also makes it easy for you to contact us with any ideas you may have for studies or suggestions about how we can improve.

Contact Information
To find out more about the study, ask a question or express a concern about the study or if you feel you have experienced any harm from the study contact one of the following:

Principal Investigators: Claire Z. Kalpakjian, PhD, MS
Mailing Address: 325 E. Eisenhower Parkway, Suite 300, Ann Arbor, MI 48103
Telephone: 734-763-0153 (Office)
Email: clairez@umich.edu

University of Michigan Compliance Help Line at 1-888-296-2481 or if you are concerned about a possible violation of your privacy, contact the University of Michigan Health System Privacy Officer at 1-888-296-2481

University of Michigan Medical School Institutional Review Board (IRBMED)
2800 Plymouth Road, Building 520, Room 3214
Ann Arbor, MI 48109-2800
734-763-4768
E-mail: irbmed@umich.edu

Attachment:Written Consent.pdf

You have selected an option that triggers this survey to end right now.

To save your responses and end the survey, click the 'End Survey' button below. If you have selected the wrong option by accident and/or wish to return to the survey, click the 'Return and Edit Response' button.