Personal Growth Scale for Family Caregivers of Individuals with Neurological Disorders

1.        Volunteering for Research
You are being invited to take part in a research study being conducted by Dr. Sonya Kim from NYU Langone Health in New York. Your participation is voluntary, which means you can choose whether or not you want to take part in this study.
Before you decide, please review this information sheet so that you understand the purpose of the study, what you will be asked to do, any risks or benefits, and how your information will be kept confidential. You may speak to your friends or family before deciding to participate.

2.        Purpose of the Research Study
This study is being done to develop a questionnaire to measure positive emotions ("posttraumatic growth") in family caregivers of individuals living with hereditary ataxia (HA).
Although most caregiving studies focus on the strain (difficulties) experienced by the caregiving family of an individual with HA, the focus on positive outcomes that may result from this experience could be quite important and potentially help individuals with HA and their families improve their quality of life and reduce the psychosocial burden of ataxia.

3.        Study Procedures
Participation in this study involves completing one short anonymous survey in a secure electronic platform (REDCap) about positive emotions that arise due to caregiving.  Completing the survey will take 15 minutes of your time.
The survey will remain open in REDCap for about six months from the start of the study. You can complete the survey using your own device and at a time that is convenient for you.
Information collected for the purposes of this research will not be used or distributed for future research.

4.        Risks and Benefits
There are some risks from being in this study. Whenever data about a person is entered into a research database, there is some risk to confidentiality. Even though the theme of this study is about posttraumatic growth and benefit finding it is still possible that you may experience frustration or temporary distress as you complete the survey. Some questions may be of a sensitive nature, and you may therefore become upset as a result. In addition, there may be some inconvenience, because participation will involve extra time to complete this survey.
You may not benefit personally from being in this study. However, we hope that, in the future, other people might benefit from this study and it helps reduce the adversity the caregiving family face, and improve the adjustment of the person with HA, the care recipient. 

5.        Alternatives to Participation
Participation is voluntary. If you choose not to participate, you can simply decline participation. There are no alternatives besides not participating. Your decision will have no impact on your relationship with the National Ataxia Foundation (NAF) or NYU Langone Health.
If you choose to participate, you will be able to end your participation early by exiting the survey before you complete it. However, once you have completed and submitted the survey, you will not be able to withdraw your participation. Since participants' survey responses are anonymous, we will not be able to identify who has completed the survey.

6.      Payment and Costs from Participation
There is no payment or cost to you for being in this study.

7.      Confidentiality
We will protect your confidentiality by not collecting any information that will identify you. We will not track your IP or email address.
What information may be used or shared with others in connection with this study?
·        Your anonymous survey responses
Who may use and share information in connection with this study? 
The following individuals may use, share, or receive your information for this research study:
·        The Principal Investigator and personnel responsible for the support or oversight of the study
·        The study sponsor: ACL-NIDILRR
·        Governmental agencies responsible for research oversight
·        Outside researcher working on the study assisting with data analysis

Certificate of Confidentiality

To help us further protect your confidentiality, this research is covered by a Certificate of Confidentiality from the NIH. The NIH has issued a Certificate of Confidentiality for this research. This adds special protection for the research information (data, documents) that may identify you.
Research information protected by this Certificate of Confidentiality cannot be disclosed to anyone else who is not connected with the research, without your consent. With this Certificate of Confidentiality, the researchers may not disclose or use research information that may identify you in any federal, state, or local civil, criminal, administrative, legislative, or other action, suit, or proceeding, or be used as evidence, for example, if there is a court subpoena, without your consent. However, disclosure, without your consent, is still necessary if there is a federal, state, or local law that requires disclosure (such as to report child abuse or communicable diseases).
The Certificate of Confidentiality cannot be used to refuse a request for information from appropriate government agencies responsible for project oversight. The Certificate of Confidentiality does not prevent you from releasing information about yourself and your involvement in this research. Federal regulations may also allow for the use or sharing of information for other scientific research. 

8.      Questions or Concerns
If you have questions, concerns, or complaints regarding your participation in this research study or if you have any questions about your rights as a research participant, you should speak with the NYU Langone Health Principal Investigator, Dr. Kim, at 212-263-4849.
If you want to talk to someone other than those working on the study, you may contact the NYU Langone Health Institutional Review Board (IRB) at (212) 263-4110. The IRB reviews all human research studies, including this study. The IRB follows Federal Government rules and guidelines designed to protect the rights and welfare of the people taking part in the research studies.
NYU Langone Health is committed to providing a safe, productive, and welcoming environment for participants and researchers in all research studies and interactions. All participants will be treated with respect and consideration, and in turn, we ask that you please treat fellow participants and research staff with respect. Please refer to NYU Langone Health Statement on the Conduct of Participants in Research Studies for further information.

9.      Agreement to Participate
You qualify to take part in this research study if: 
1)     you are a family caregiver of an individual with HA
2)     you have been looking after the person with HA for at least one year regardless of whether you live with the care recipient
3)     you are at least 18 years of age and living in the U.S

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