The Fostering Inclusivity in Research Engagement for Underrepresented Populations in Parkinson's Disease Study (FIRE-UP PD) |
Thank you for participating in our research study. We hope to better to understand what makes people interested in being part of Parkinson's disease research.
WHAT IS THIS STUDY ABOUT? In recent years, scientists have learned that improving representation of all people in clinical research is an important way to fully understand diseases. This also ensures that new treatments work well for everyone. However, appropriate representation in clinical research for Parkinson's disease has been difficult. Even though Parkinson's disease affects people from all walks of life, most research participants come from the same background. While scientists understand some of the barriers preventing certain groups from participating in Parkinson's disease studies, many solutions have not been tested.
This study is made up of three surveys which will ask you about your awareness and attitudes about Parkinson's disease research. By completing the surveys, you can help researchers learn about your experiences and insights. About 640 people will take part in this study.
The Michael J. Fox Foundation for Parkinson's Research is paying for this study to be done.
WHAT DO I NEED TO DO? This is a survey study. Your participation is voluntary and you can stop at any time. Deciding not to participate won't affect medical care you receive at your medical institution now or in the future, or any benefits you receive now or have the right to receive. No medical treatments, advice or interventions will be given to you as part of this study. To participate, you need to provide informed consent, then complete the surveys on the following screens. After completing our surveys, please consider visiting Fox Insight (www.foxinsight.org/fireup) to learn more about ways to contribute to Parkinson's disease research.
WHAT WILL HAPPEN WITH THE INFORMATION I GIVE YOU? The information you provide to FIRE-UP PD will be de-identified (removed of any personal information) and securely stored at Massachusetts General Hospital. Only qualified researchers will be able to request information provided through FIRE-UP PD. We will ask you for a current email address in case you need to complete the surveys in more than one session. Your personal information will be kept separately from your data and researchers will not have access to it.
This study does not involve treatment or personal health assessments. We will take measures to protect the privacy and security of all of your personal information you provide to this research, but we cannot guarantee complete confidentiality of study data.
The Principal Investigator for this research is Jonathan Jackson, PhD of Massachusetts General Hospital. To contact Dr. Jackson with any questions or concerns about this research, please call (617) 726-3608.
If you'd like to speak to someone not involved in this research about your rights as a research subject, or any concerns or complaints you may have about the research, contact the Partners Human Research Committee at (857) 282-1900.
We are required by the Health Insurance Portability and Accountability Act (HIPAA) to protect the privacy of health information obtained for research. This is an abbreviated notice, and does not describe all details of this requirement. During this study, identifiable information about you or your health will be collected and shared with the researchers conducting the research. In general, under federal law, identifiable health information is private. However, there are exceptions to this rule. In some cases, others may see your identifiable health information for purposes of research oversight, quality control, public health and safety, or law enforcement. We share your health information only when we must, and we ask anyone who receives it from us to protect your privacy.