Table A1.
Submodules of the TeleDREAMS Program
| Week 1: Introduction to Research Advocacy |
| Learn what an advocate is and what it means to be an advocate. |
| Including people with PD and care partners in study decision making; peer-to-peer education. |
| How to contribute to age-related research focusing on diverse groups. |
| Recognize who can become an advocate (hint . . . you!). |
| Learn strategies and work with community members to advance the interests of all people in the Parkinson’s and research communities. |
| Supporting research participants; teaching peers how to get involved. |
| Understand the importance of building relationships for clinical scientific research. |
| Week 2: Parkinson Disease Clinical Research in the Pipeline |
| What is research? |
| What are the different types of research? |
| How is research funded? |
| What are the different types of clinical research trials and what steps do they go through? |
| Why does research matter? |
| What could participation in research mean for me? |
| What should one consider when deciding whether or not I should participate in research? |
| Where can I get more information about research participation and studies? |
| Week 3: Ethics and Research |
| What is ethics in research? |
| Why is ethics important in research? |
| What factors are important for ethics in research? |
| What important ethical factors are there for aging research? |
| Understand the role of hope and false hope in research? |
| What are the two approaches to research? |
| Know what happens when unethical research is allowed to take place? |
| What laws are there to prevent unethical research? |
| Week 4: Analysis and Evaluation of Clinical Research |
| What are the major parts of a scientific research paper? |
| What are the minimum and maximum? |
| What is the mean or average? |
| What is the mode? |
| What is a p-value? |
| What does significance mean? |
| Week 5: Aging and Clinical Research |
| What is aging and what changes go along with aging? |
| What are the different types of studies that interest you? |
| How can you find clinical trials? |
| What are the pros and cons of participating in clinical studies? |
| How can I make a difference? |
| Week 6: Understanding Informed Consent and Health Literacy |
| What are the definitions of health literacy? |
| How does health literacy affect you? |
| What is informed consent? |
| How can you ensure that you are informed? |
| How can you communicate health literacy to others? |
| Week 7: Effective Advocacy in the Clinical Research Process |
| What are some of the benefits advocates bring to the clinical research process? |
| What are the roles and responsibilities of a research advocate? |
| What are the roles and responsibilities of a researcher? |
| How can you be an effective advocate? |
| Week 8: Engaging Diverse Communities in Research and Getting Started as a Research Advocate |
| What is a clinical trial? What is an observational study? |
| Do clinical trial populations equally represent the targeted population? |
| How does the lack of diversity within a clinical trial effect the safety of treatment options for the general population? |
| How can you help to improve racial and ethnic diversity in clinical trial populations? |