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Hack for NF: How patients help set priorities in NF research and application development

By December 10, 2020December 18th, 2023Science & Research

The Children’s Tumor Foundation hosted its second annual Hack for NF, a hackathon for neurofibromatosis (NF) research. The impetus for hosting the Hack for NF continues to be the high unmet medical need that rare diseases like NF represent. This event presents an innovative way for the Children’s Tumor Foundation to help improve or create patient useability and accessibility of applications and to help to build on solutions data analytics and research methodologies being used by researchers every day.

The 2020 virtual event garnered experts in different disciplines such as healthcare startups, developers, solutions architects and hackathon enthusiasts for six weeks to drive scientific and medical innovation and improve the lives of patients living with neurofibromatosis and other rare diseases. Solutions range from new ways to analyze data and identify new drugs and drug targets; to engaging patients via mobile devices; to data visualization apps and analytical tools for the NF portal. Each winning project received a cash prize to continue developing their projects.

One key component of the Hackathon this year was the partnership between patients and caregivers, and participants. Eleven patient mentors representing NF1, NF2, and schwannomatosis offered input on the proposed projects by sharing their unique and valuable perspective as patients to help develop meaningful solutions for those living with NF. Patients were asked to commit a minimum of two hours per week over six weeks to be available for consultation with developers. This engagement was facilitated using an advanced platform for online hackathons, phone calls, video conferencing tools as well as weekly webinar updates. Being a mentor allowed patients to keep track of how all the teams were progressing with their projects.

Given the variability of the disciplines participating in the development of the application, many “hackers” had never met an individual living with NF, or in some cases, had never heard about NF. Including patients as a part of the program was helpful in raising awareness about NF and helping them understand what it means to live with NF and what is important to the quality of life of patients.

Patient mentors reported a high level of satisfaction as participants in the program. They felt valued by having the opportunity to participate and share their NF journey and being listened to. Some mentors had a high level of engagement with multiple contacts from different teams, participated in interviews, reviewed questionnaires and shared medical data they felt was appropriate to help project development. Patients reported that teams were interested in learning about their diagnosis journey and management of NF. They were interested in knowing what would be the most impactful for caregivers and patients in an app. Patients and caregivers contributed ideas and ways to consider improving applications.

NF2 patient Cole Harrell, 26, participated as a judge and, while he spoke specifically about NF2 research, his message is important for all types of neurofibromatosis research: “The solutions to really try and improve the quality of life in NF2 patients depends on input from all different patients with different symptoms and different presentation of NF2. You could really see how that came to life. The developers are great, but they won’t know what to develop if we don’t tell them. That is why it is so important for patients to be involved.”

Patient Engagement is becoming more and more relevant in research and development of therapies for diseases. Researchers, clinicians, pharmaceutical companies, and regulators (FDA) are involving patients to improve their therapy development and requesting their input in the development of clinical trials. This makes sense as given the more targeted approach of current science, which is more personalized and sometimes complex in its treatment approach.

This is why the Children’s Tumor Foundation built a Patient Engagement program to accelerate the development of drugs for NF by partnering with patients across all our research programs and fostering strong collaboration between research stakeholders, pharmaceutical companies and regulators. The patient engagement program provides training that empowers patients and catalyzes their involvement in research. For more information about particpaitng in our patient engagement opportunities, please visit