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 Advocates 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.
By becoming a Patient Advocate you can influence neurofibromatosis research and accelerate the development of treatments to the market. Enrolling in our 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 also include an in-person component. When the training has been finished, participants receive a Certificate of Completion naming them as Patient Advocates of the Children’s Tumor Foundation.
After the training is complete, Patient Advocates will be prepared to:
Download your Patient Advocate Badge HERE.
Children's Tumor Foundation Patient Advocates are a network of patients and caregivers who have devoted their time, talent, and experience with NF to help accelerate research. They team up with researches and other drug development stakeholders as advisors, mentors, and co-investigators to help these experts understand what it is like to live with NF and what outcomes are important to patients.
The CTF Patient Advocate Training Program is bridging the gap between clinicians, researchers, and patients. By collaborating with patient advocates, you can improve your studies and accelerate the research process.
The Children's Tumor Foundation can help you identify and partner with Patient Advocates throughout all stages of research and drug development. For instance, the Children’s Tumor Foundation has:
If you are looking to work in collaboration with Children’s Tumor Foundation Patient Advocates, please contact Traceann Rose, Director Patient Engagement, at firstname.lastname@example.org or 212-344-6691 to discuss ways we can work together.
Meet CTF’s Patient Advocates - Coming Soon!
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 Advocates can become involved in many aspects of research. For example: