- Cultivating relationships with researchers, Pharma, and industry to elevate the voice of the NF community.
- Educating the NF community to work closely with researchers and impact the future of NF research.
- Developing leaders empowered to educate their communities about NF research.
Patient Engagement
CTF Engage: Centering the experience and elevating the voice of the NF community.
About CTF Engage
What is CTF Engage?
CTF Engage is the patient engagement initiative of the Children’s Tumor Foundation, dedicated to transforming the landscape of NF research through the curation of quality, meaningful interactions between patients and families with research stakeholders. Our mission is to support scientific projects of merit that generate value for the NF community. We do this by enhancing both their patient-centricity and their impact on our community. We are committed to upholding the Seven Principles of Engagement and honoring the incredible diversity of NF patients and their lived experiences in the work that we do.
What is Patient Engagement?
Patient engagement is increasingly recognized as an important component of the research process. It promises to accelerate the development of new treatments by focusing researchers on real-life issues they may not have otherwise considered. We use the term “Patient Engagement” to mean the inclusion of the patient voice in NF research and the view that people with NF are not just subjects but are partners in the research process. In PE, patients and scientists work together to accelerate therapies that work for the NF community.
Become a Patient Representative
By becoming a Patient Representative, you can influence neurofibromatosis research and accelerate the development of treatments to the market. Our online training program is designed to increase your understanding of the research and drug development process, regulatory affairs, and all forms of 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.
We are looking for NF-affected adults and NF care advocates of all backgrounds. Must be 18 or older to apply. There is no experience required.
CTF Engage Projects
What to expect when working with researchers.
Priority Setting
Focus Group or Survey
Tell researchers what issues matter the most to you, help them find the right questions to study.
Reviewing Materials
Focus Group or Independent Review
Look at ongoing projects to help researchers make their studies more relevant to patient's needs and wants.
Advising Studies
Individual Partnerships
Partner with researchers for study or trial, helping them make decisions along the way.
Disseminating Results
Events and Writing Opportunities
Help researchers communicate their findings. Talk about your experiences in research with others.
Patient Engagement in Depth
Children’s Tumor Foundation Patient Representatives 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 researchers 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.
Pioneered by patients in the HIV and breast cancer communities, patient engagement has increasingly become an important part of the research process and has recently gained momentum in rare diseases. The Children’s Tumor Foundation is proud to join this movement in centering patient experiences and elevating the patient voice in research for new therapies. Our first Patient Representative forum took place in 2018 with the support of the Patient-Centered Outcomes Institute (PCORI), which is promoting patient engagement in research. Since then, CTF has connected NF patients and families to projects across the research and development continuum.
To learn more about opportunities and best practices for patient engagement, please see the following resources:
For Researchers: Working with Patient Representatives
CTF Engage bridges the gap between government regulators, researchers, and patients in neurofibromatosis. By collaborating with Patient Representatives, you can improve your studies and accelerate the research process.
Patient Representatives Can:
- Guide research priorities and help you narrow down a research question
- Review specific study materials, such as protocols and recruitment strategies
- Serve as study advisors (i.e., community advisory boards) and co-investigators
- Help disseminate your results to the community (write lay summaries, communicate findings)
By including Patient Representatives, you can make vital connections among the NF community, educating more patients on the value of participating in research.
Examples of the work that Children's Tumor Foundation Patient Representatives have done in the past include:
- Shared their experiences of living with NF at the first-ever NF Listening Session with the U.S. Food and Drug Administration (FDA) – read more here
- Collaborated to maintain and improve the CTF Patient Registry for clinical trial recruitment and research studies
- Acted as patient “mentors” that guided teams during the NF Hackathon initiative
- Served as lay reviewers in our grantmaking process
- Acted as advisors to CTF research teams such as Synodos, where they shared their stories about what it’s like to live with NF
- Assisted the University of Alabama in recruiting patients to participate in the initial review of an intimacy study survey that will be sent out to the patient community
- Gone on to serve in REINS (Response Evaluation in Neurofibromatosis and Schwannomatosis) working groups
If you are looking to work in collaboration with Children’s Tumor Foundation Patient Representatives, please email us at engage@ctf.org to discuss how we can work together.
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