Rare365

Inspiration

Our inspiration came from both a personal story and an insight from the speakers during the HackRare competition. From our experience in Notre Dame’s Patient Advocacy Initiative, we have formed strong relationships with patient advocacy organizations. The CARES foundation is one partnership, promoting the wellbeing of patients with congenital adrenal hyperplasia (CAH). A mother with a child with CAH informed much of our app, sharing the advocacy burnout and fragmentation in care that she faces, especially when her son faces flares from CAH requiring medical attention at school and in sports. In addition, Lynn Garrick from IPWSO shared her testimony at HackRare, offering insights into the irregular occurrences of emotional outbursts due to PWS as well as the need to be an expert on the disease as a caretaker. With our interactions with both of these rare disease groups, we hope that our app will overcome the barriers that they face in advocacy, care, and coordination.

What it does

Similar to existing menstrual cycle tracking apps, our app RARE365 allows individuals with rare disease to log their daily symptoms and ultimately visualize trends and flare patterns over time. In this way, daily fluctuations and the instability of rare diseases don’t go unnoticed or miscommunicated. RARE365 follows an accessible process: log, visualize, share. Patients can also request information from physicians and other stakeholders with a pathway that allows for specialists to submit visit summaries that automatically populate the calendar. Not only does this app help individuals with rare diseases better understand their symptoms, it drives action and support in their daily lives. Patients are able to send brief summaries of flare patterns and symptom trends to their physicians, teachers, and supervisors in a format tailored to the specific audience. By having this shared timeline, RARE365 helps everyone respond more proactively in the life of an individual with a rare disease. Individuals feel empowered in clinical conversations by reducing the burden of explaining their condition, coordinating care between specialists, and educating those in their community. Now, their next flare-up doesn’t have to be unexpected. RARE365 is a proactive tool that supplements clinical decision-making and builds collaboration across all areas of life.

How we built it

We started to build RARE365 with the problem in mind. We knew we wanted to address the flares and irregularities in symptoms that accompany rare disease. For many, these flares can go unnoticed or miscommunicated to physicians. Additionally, we wanted to address the fragmented care of someone dealing with a rare disease and all of the invisible coordination work that caregivers do. Through the Science and Patient Advocacy Initiative at Notre Dame, we have had talks with patients and caregivers about the gaps and challenges that exist in clinical care and the daily life impacts that accompany a rare disease. A trend we noticed is that caregivers and patients often spend a lot of time explaining their changing condition to teachers, coaches, employers, and different physicians. We wanted to address this challenge by creating a single platform that can bridge the fragmented care between physicians, and relieve some burden from caregivers and patients by providing a way they can consistently track their symptoms to better communicate their status with those around them and stop spending hours explaining their rare disease and personal symptoms. We recognize that every person with a rare disease experiences different symptoms, so we wanted to make something highly personalized and customizable. In order to do so, we took inspiration from menstrual cycle tracker apps, which allow biological women to record their menstrual cycles with ease. We used our limited HTML experience, along with JavaScript and CSS, with assistance from Codex, OpenAI’s coding agent, to develop a web app prototype to develop this collaborative calendar.

Challenges we ran into

We faced several challenges in creating this platform. While we joined this competition excited to use our background and experiences in patient advocacy, one of our main challenges is our lack of coding proficiency. This made it difficult to come up with a project that we could execute, and was within the scope of the prompt. Essentially, we had to learn how to code while creating our project and ensuring it was something creative and unique. Additionally, the nature of our project meant that there was not a comprehensive dataset that we could use to test our model. Thus, we had to beta test our code by manually entering symptom data which was extremely time consuming. Another challenge we faced was the time restraints of HackRARE. We were only able to build a mockup of what we want our app to look like, and were not able to build out the complete app. In the future, we would love to build out the app and create something that is accessible in multiple languages, has measurable trend predictability features, and can seamlessly iterate care from caregivers, physicians and others to make lasting impacts on the lives of those affected by rare diseases.

Accomplishments that we're proud of

Since we came in with limited coding background, we were very proud of our ability to pivot, adapt, and find a way to put our ideas into action. The rare disease patients and organizations who spoke with us this weekend inspired us to put their experiences and desires at the forefront of our project. We feel proud and confident that our project is something that rare disease patients would find truly valuable. We are proud of our effort and interest in engaging with the patients and organizations that were involved in HackRare. Our minor at Notre Dame has always inspired us to be engaged with the rare disease community and we definitely made an effort to showcase this passion here at HackRare, and hope to continue it through an opportunity at the NORD Breakthrough Summit. Though we all knew each other from various classes at our university, we developed closer friendships in tackling this challenge together. While this isn’t something we expected to get out of this weekend, we are truly proud of our ability to come together around the common cause of patient advocacy. This is one of our most valuable takeaways.

What we learned

From our experience in office hours, speaking with clinical and advocacy experts at HackRare, and completing personal research, we learned about the power of mobile apps in rare disease care as well as its current limitations. Rare diseases are heterogeneous in symptoms, even among patients with the same condition, creating difficulty in determining which symptoms to track. With personalized choice in symptom tracking and an algorithm that creates a baseline for individual patients, we learned how this problem can be addressed in a patient-focused manner. We also learned that smartphones are a particularly valuable tool for remote monitoring in rare and chronic disease populations, and the ways in which research is informing their development. Significantly, we found that apps exist that connect patients to other patients and patients to research, but there is a gap in connecting patients to their immediate circle, including teachers, coaches, and specialists. From the speakers, we learned how personal stories can promote change in the lives of patients with rare disease. Most notably, we heard from Dr. Sonia Vallabh, who responded with her own personal rare disease diagnosis with incredible initiative and effort. From starting a lab to personally asking the FDA to reconsider its requirements for a clinical study in rare disease patients, Dr. Vallabh has embodied the energy and drive around advancing rare disease research and treatments that we hope to carry into our careers as future researchers and physicians. Raising the voices of patients, such as in the case of IPWSO and the RRP foundation, in FDA meetings and scientific advisory boards has contributed to life-altering change in the lives of these patients, including the development of new treatments. However, the most important lesson is that even with all of these incredible researchers and advocates, there is still more work to be done, and we are motivated to contribute.

What's next for Rare365

Our vision for RARE365 is a fully developed app for rare disease patients and caregivers. While we understand how much money, time, experts, and resources go into app development and maintenance, we truly believe this product will have an impact on the community. With an easy to use platform available in multiple languages, this app can be accessible to a wide range of patients and rare diseases. Patients will save valuable time during medical appointments, communicate with teachers or employers with ease, and, most importantly, gain a deeper understanding of the trends of the symptoms that arise in their unique rare disease experience. This will improve their ability to manage their own condition, reduce their cognitive overload, and give them back the valuable time they need to navigate their rare disease in other ways. Future steps include: longitudinal testing of the app for different rare diseases to ensure quality and accuracy on a long-term scale; developing the flare prediction probability tool as a supplement to clinical guidance; and developing avenues to guide newly diagnosed patients in using the app.

Built With

• codex
• css
• html
• javascript