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.
Become a Patient Advocate
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.
- Online Training Course Description
- How Advocates Can Drive Research and Drug Development
- Sample Training Program Agenda
After the training is complete, Patient Advocates will be prepared to:
- Participate as co-reviewers and lay-patient representatives for the Children’s Tumor Foundation Research Programs (such as NF Registry and Research Awards).
- Join committees with experts in a clinical setting – such as Response Evaluation In Neurofibromatosis and Schwannomatosis (REINS).
- Serve on review and advisory panels for federal agencies and other stakeholders seeking patient’s input as a part of their research, drug development and funding processes.
- Join CTF’s Patient Help Doctors/Researchers Network, a resource pool of expert patients that facilitate reciprocal communication with researchers and other NF experts.
For Patient Advocates
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.
- Meet CTF’s Patient Advocates - Coming Soon
- Toolkit for patient focused drug development
- Future Patient Representative Training Course Dates: September 19-21, Hyatt Regency, San Francisco
For Researchers: Working with Patient Advocates
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:
- involved patients and families in the use and improvement of the CTF patient registry for clinical trial recruitment and research studies.
- included patient representatives in decisions about allocation of biobank specimens.
- developed a framework for including lay reviewers in our grantmaking process.
- Included patients as advisors to CTF research teams such as Synodos, where they shared their stories about what it's like to live with NF.
- worked with the University of Alabama to recruit patients to participate in the initial review of an intimacy study survey that will be sent out to the patient community.
- collaborated with the REINS (Response Evaluation in Neurofibromatosis and Schwannomatosis) group, strategizing on how to recruit patients for eight working groups, resulting in the recruitment of 34 patient advocates.
If you are looking to work in collaboration with Children’s Tumor Foundation Patient Advocates, please contact Traceann Rose, Director Patient Engagement, at email@example.com or 212-344-6691 to discuss ways we can work together.
Meet CTF’s Patient Advocates - Coming Soon!
Who are Patient Advocates?
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.
What is required of Patient Advocates?
- May be required to travel overnight to attend conferences or meetings
- Computer and internet proficiency; have an email address
- Work in a team with flexibility to work with different groups of people
- Communicate effectively and listen actively
- Be comfortable speaking to groups of people
- Eager to gain an education about the science behind NF and its treatment
What is the role of Patient Advocates?
Patient Advocates can become involved in many aspects of research. For example:
- Patient co-reviewers for research proposals
- Disseminate research results to the NF community
- Be a spokesperson at meetings and conferences
- Be members of REiNS working groups to determine endpoints for clinical trials
- Increase awareness and understanding about the critical role that people with NF can play in treatment development
- Help align therapies development with the priorities of people living with NF