Study Information

We (the Amputee Coalition and Össur) are conducting a study: Employment and Activity Trends in Individuals With Upper-Limb Difference.  The study is funded by Össur. Your participation is voluntary and you may withdraw at any time. Your decision not participate or to withdraw will not result in any penalty or loss of benefit to which you are otherwise entitled, or otherwise affect your relationship with Amputee Coalition.

What happens during the study?
You are being asked to be in a research study. The study consists of a survey about the usefulness of different prosthetic hands/devices in performing work and other daily tasks, and whether prosthetic devices have helped you concerning employment. We are seeking the experiences of upper-limb prosthetic users – and non-users! The survey asks questions such as what type of work you did before and after you started using a prosthesis, your experience of the training you received, and your feelings about how helpful the prosthesis is in your life now, or why you choose not to use one.

Who can take part?
The survey is open to anyone over the age of 18 with a hand/upper-limb amputation or congenital difference, who uses any type of upper-limb prosthesis, as well as those who have chosen not to use a prosthesis. You do not need to be in current employment to take part. The survey is designed to be completed anonymously.

What is the purpose of the study?
The purpose of the study is to understand how people use their prosthesis both at work and in their activities of daily living.
The results of the survey will be published and will be available from the Amputee Coalition. The survey is designed to be completed anonymously and your privacy will be strictly protected.

What happens during the study?
You will be asked to complete an online survey. The survey will take about 10 minutes to complete. Once you complete the survey, your participation in the survey is complete.

What are the potential risks?
There are no potential risks associated with completing this study. The survey is designed to be completed anonymously and your privacy will be strictly protected.

What are the potential benefits?
The results of the study may help those in the industry to better understand the needs of individuals with upper-limb difference and may influence the availability of prosthetic hands/devices from care providers as well as reimbursement by health insurance, Workers' Compensation, etc. Participation in this study will not impart any direct risks or benefits to you; however, these results may influence the provision of upper-limb prostheses in the future.

What is the compensation?
You will not be paid for your participation in the study.

How do I withdraw from the study?
If you wish to withdraw from the study at any time, simply exit by closing the browser window. Your participation in any research study is completely voluntary and you are free to withdraw your consent to participate at any time, without judgment or providing an explanation If you prefer not to complete the survey, you may exit at any time by closing the browser window. If you withdraw from the study, all data collected to that point will be retained in the study database but no new information will be collected.
How is my privacy protected?

Your privacy is strictly protected. The survey is designed to be completed anonymously; you do not need to enter identifying information such as name, date of birth or contact information to take part. Any information that you do provide is referred to by a unique code only (pseudonymized data). Össur staff will not share your study data with any unauthorized person. Authorized persons include: the research sponsor, selected Össur staff and regulatory authorities who review the study data in some cases, such as the Food and Drug Administration, and the Independent Review Board (IRB) that reviewed the research. Data anonymity will be maintained in the event that the results of the study are published (e.g., in a research paper).

What if I have a complaint or concern?
For more information, or in the event of any questions, complaints or concerns, or if you think you have been harmed by the research, please contact the study Investigator, Diane Atkins OTR/L, FISPO at diane@dianejatkins.com.
This research is being overseen by the New England Independent Review Board (“IRB”). An IRB is a group of people who perform an independent review of research studies. You may talk to them at (800) 232-9570, info@neirb.com if:
  • You have questions, concerns, or complaints that are not being answered by the research team.
  • You are not getting answers from the research team
  • You cannot reach the research team.
  • You want to talk to someone else about the research.
  • You have questions about your rights as a research subject.

The survey can be accessed by clicking "NEXT" below.

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