Welcome! Learn more about Hawaii Neurotrauma Registry and this Survey

 
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Pacific Disabilities Center
Consent to Participate in a Research Project:
Hawai‘i Neurotrauma Registry

Aloha,

This survey collects information for the Hawai‘i Neurotrauma Registry for the Hawai‘i State Department of Health, Developmental Disabilities Division, Community Resources Branch. 

Beginning in 2013, the Hawai‘i State Department of Health contracted with the Pacific Disabilities Center of the John A. Burns School of Medicine, University of Hawai‘i, to collect information about brain injuries, strokes, and spinal cord injuries. 

Hawai‘i residents of any age who have had at least one brain injury, stroke, or spinal cord injury are invited to participate. It does not matter when or where the injury took place. 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: If you decide to fill out the survey, it will take about 30 minutes to complete. Please note that it may take you more or less time to finish the questions. You have the choice of taking the survey on a computer, on paper, over the phone, or in person.

The survey includes questions about you and your injury, the kinds of treatment you received, and how the injury has affected you. It asks about what your condition was before and after the injury and your needs right now. Someone from the Pacific Disabilities Center or the Hawai‘i State Department of Health may contact you in the future with additional questions and/or to update your information.

Benefits and Risks: There is no direct benefit to you from sharing your information. However, if you fill out the survey, it may help us identify services and resources needed by those 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 Hawai‘i State Department of Health, Developmental Disabilities Division, Community Resources Branch to assist in planning for persons with neurotrauma injuries.

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