The Patient Representative Training Program is CTF's Patient Engagement initiative designed to prepare individuals with NF and their families to participate as advocates in NF research. Our goal is to help patients learn how to add their perspective during all phases of the research process – from the laboratory, to the clinic, to the community. Patient Representatives are trained to work with stakeholders such as researchers, research institutions, the pharmaceutical industry, the Food and Drug Administration, and patient advocacy organizations.
What is Patient Engagement?
Patient engagement in research is increasingly recognized as an important component of the research process and promises to accelerate the development of new treatments by focusing researchers on real-life issues that they may not have otherwise considered.
We use the term “Patient Engagement” to mean the inclusion of patient representatives in NF research, and the view that people with NF are not just subjects, but are health care consumers who have a role in managing their care, directing their health outcomes, and accelerating therapies for the entire NF community.
CTF's Patient Engagement Program is committed to expanding awareness and facilitating opportunities for patients to get involved in research through:
This online training program provides an education for patients to increase their understanding about the research and drug development process, regulatory affairs, and neurofibromatosis (NF). Activities to encourage critical thinking and engagement in research also play an important part in the training. Certain training groups may also include an in-person component. When the training has been finished, participants will receive a Certificate of Completion from the Children’s Tumor Foundation.
After the training is complete, graduates will be prepared to:
Individuals with a diagnosis of neurofibromatosis (NF) and/or their caregivers who are interested in developing the skills to participate in research and motivated to make a broader impact.
Patient Representatives can become involved in many aspects of research. For example: