Welcome! Learn more about Hawai‘i Neurotrauma Registry and this Survey

 
17% of survey complete.
Pacific Disabilities Center
Consent to Participate in a Research Project:
Hawai‘i Neurotrauma Registry Survey

Aloha,

This survey is for Hawai‘i residents of all ages who have had at least one traumatic brain injury, stroke, or a spinal cord injury, which are known as neurotrauma injuries. It does not matter when or where the injury took place. 

The State of Hawai‘i, Department of Health contracts with the Pacific Disabilities Center of the John A. Burns School of Medicine, University of Hawai‘i, to conduct this survey. The reasons for collecting this information are to:

- Describe the health and service needs of persons with neurotrauma injuries
- Identify gaps in services and supports for persons with neurotrauma injuries
- Educate service providers
- Develop safety and prevention plans and policies

Project Description – Activities and Time Commitment: The survey takes about 10 minutes to complete. Please note that it may take you more or less time to answer the questions. Someone from the Pacific Disabilities Center or the State of Hawai‘i, Department of Health may contact you in the future with additional questions and/or to update your information.

There are questions about you, your injury, and how the injury has affected you. The survey also asks about the services you receive and the ones that you need. 

Benefits and Risks: There is no direct benefit to you from sharing your information. However, by completing this survey, you may help us to identify and / or improve available services and resources for you, your family, and others with neurotrauma injuries in Hawai‘i.

There is little to no risk to you. You might feel stress thinking about your past experiences. You might feel uncomfortable sharing personal information or writing down responses. If you feel discomfort from the study and would like to talk, please contact us at the Pacific Disabilities Center at (808) 692-1372. You don't have to answer any question you don’t want to, and you can decide to stop answering questions at any time.

Confidentiality and Privacy: Your participation and responses are kept strictly confidential to the extent allowed by law. All information is kept in a secure location. Only project staff members have access to the data, although legally authorized agencies, including the University of Hawai‘i Human Studies Program, have the right to review research records.

All written or published reports do not give any information that will identify you in any way. Reports and the information will be given to State of Hawai‘i, Department of Health, Developmental Disabilities Division, Community Resources Branch to assist in planning for persons with neurotrauma injuries.

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