About

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: 

  • Offering the Patient Representative Training Program.
  • Facilitating patient participation in specific research opportunities to graduates of this program.
  • Encouraging shared knowledge through partnership with organizations and groups committed to patient-centered research.
  • Maintaining the Patient Help Doctors/Researchers Network, a resource pool of expert patients that facilitate reciprocal communication and collaboration with the NF research community.

Training Program Highlights

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:

  • 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 panels with the Food and Drug Administration (FDA)
  • Join CTF’s Patient Help Doctors/Researchers Network, a resource pool of expert patients that facilitate reciprocal communication with researchers and other NF experts.

Q&A

Who are Patient Representatives?

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 Representatives?

  • 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 Representatives?

Patient Representatives 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

Learn More

Download a brochure about this program HERE. 

The first Patient Representative Training is currently underway. If you are interested in joining a future training, please submit your information HERE.