For the more than 400 million people living with a rare disease worldwide, the journey towards diagnosis is often a challenging process. Even after receiving a diagnosis, treatment options are minimal with only 5% of rare diseases having an approved treatment. Because of this significant barrier, Horizon Therapeutics partnered with the Massachusetts Institute of Technology (MIT) Solve program in 2021 to create an annual challenge, The Horizon Prize. The Horizon Prize brings together innovators and entrepreneurs to create solutions to challenging problems that empower, educate and inspire the rare disease community.
This year’s challenge poses a unique question to entrepreneurs and innovators to solve a problem that so many face, “How can we improve the quality of life of people who have been diagnosed with a rare disease?” The challenge seeks solutions that optimize holistic care for people with rare diseases; support daily care management for patients and/or their care partners; mitigate barriers to accessing medical care after diagnosis, which disproportionately affect disinvested communities and historically underrepresented identity groups; enhance coordination of care and strengthen data sharing; empower patients with quality information to fight stigma; and promote community and connection among rare disease patients and their advocates.
In 2022, a total of $150,000 in prize funding will be awarded for up to two solution teams selected from a network of thousands of innovators and researchers. Meet this year’s five finalists to learn more about their solutions to improve the lives of those in the rare disease community.
Members of the rare disease community are often faced with mental health challenges on top of their rare disease management, but many may not receive the mental health diagnoses and care they need. Hollo Limited is a technology company based in Hong Kong developing digital solutions to improve how mental health is detected, diagnosed and treated. The company’s tool utilizes artificial intelligence (AI) to allow for more accurate diagnostic frameworks that are more inclusive and more accurate – reducing inequalities and inefficiency in the diagnostic process.
Additionally, they’ve integrated an automated digital therapy product which incorporates gamified versions of evidence-based interventions. Through educational content, gamified training and exercises, the tool can help community members improve mindfulness and reduce anxiety and depression.
Their combination of objective digital biomarker data and digital intervention will allow for preventive care that is scalable and able to target larger populations while reducing stress on the healthcare system. The platform will undergo a clinical trial with cancer patients in Fall 2022.
Learn more about Hollo (Digi-ACT) on the Horizon Prize website (https://solve.mit.edu/challenges/horizon-prize-2022/solutions/65560), or by visiting the company’s site (https://www.hollo.hk/).
Led by registered nurse, Melissa Bime, Infiuss has created a decentralized clinical research platform designed to power remote clinical trials in Africa, home of one of the most diverse populations in the world. The platform connects researchers and pharmaceutical companies directly to members of the rare disease community in Africa, along with supporting research site selection data management and more.
Through the platform, members of the rare disease community in Africa can access more accurate diagnostic, treatment and disease management options that otherwise would have otherwise not been accessible. On the other side, researchers can connect to a diverse population that has historically been difficult to reach due to lack of healthcare resources, infrastructure challenges and economic means. The platform is already being utilized by pharmaceutical companies and health organizations to recruit participants in Nigeria, Cameroon and South Africa.
Learn more about Infiuss on the Horizon Prize website (https://solve.mit.edu/challenges/horizon-prize-2022/solutions/65165), or by visiting the company’s site (https://infiuss.com/).
The EB Research Partnership (EBRP) team began with a question: what if we could make navigating the researcher and patient journey as simple as entering a destination into your GPS? EBRP was founded in 2010 by a group of parents seeking to save their children’s lives and cure the devastating and life-threatening genetic rare skin disease epidermolysis bullosa (EB). In the process, they would pioneer an innovative business model to lead the way for the more than 7,000 rare diseases that affect millions of people worldwide.
Their solution is a data platform that centralizes comprehensive patient data, resources, and clinical trial information and makes it accessible to investigators, patients and industry partners to streamline the process of discovering cures. By logging into separate portals and navigating to dashboards created specifically for their needs, investigators and patients can quickly and easily access phenotype and genotype data and contribute information toward the overall goal of treatment and care for rare diseases. Investigators can evaluate patient data, research new therapies, update clinical trial information and directly interface with patients. Similarly, patients can directly contribute their data, request at-home genetic testing kits, be matched to specialists and appropriate clinical trials and opt-in to be connected to similar patients and families. The “one-stop-shop” interface helps drive toward the destination of a cure for EB and serves as a model for other rare diseases.
Learn more about EBRP and the Patient-Driven Data Platform for Rare Disease on the Horizon Prize website (https://solve.mit.edu/challenges/horizon-prize-2022/solutions/63502), or by visiting the site (https://www.ebresearch.org/data.html).
Combined, rare pulmonary diseases, primarily consisting of various types of interstitial lung diseases (ILDs), affect about 1.2 million to 2.5 million people in North America, and millions more around the world. The Systematic Intervention Agent (SiA®) created by Briota ApS Denmark is an AI-first, holistic, personalized self-care platform for people living with rare lung diseases designed to improve their quality of life. This platform is extendible to patients with other chronic or rare conditions who need technology solutions to improve Health Related Quality of Life (HRQoL).
The software assists doctors with a clinical decision support system to increase early and precise diagnosis of interstitial lung diseases and provides patients with training, information and tools for measuring and recording lung function as well as a comprehensive support network. The AI first platform was battlefield tested and utilized during the COVID-19 pandemic and has been clinically validated in various studies in India. The SiA® platform uses AI and data science for providing actionable, meaningful and humane insights to the doctor for developing a personalized treatment plan for the patient. The SiA™ platform’s community features help patient and family collaborate more effectively with doctors, holistic coaches and other patients and their families.
Learn more about SiA AI First Platform on the Horizon Prize website (https://solve.mit.edu/challenges/horizon-prize-2022/solutions/64927), or by visiting the Briota websites (https://briota.dk/en/#service) and www.briota.co.
Vula Mobile is designed to connect health workers efficiently with each other to help provide a network of holistic care centered around the patient. This is particularly important for people with rare diseases, when the healthcare provider seeing the patient in person may not be an expert in that particular rare disease. The platform gives healthcare workers access to specialist advice and the ability to coordinate specialty referral services for the patient. Educational data on specific rare diseases is also incorporated into the platform, providing monthly updates on rare diseases to ensure health care professionals are seeing the latest information and can recognize rare diseases when they come across them in their patients.
The current program is being launched in South Africa, with expansion to Namibia and Botswana underway. The next phase will include Ghana, Kenya and Rwanda. The team includes a member of the rare disease community, who helps the organization better understand the experience of what it’s like to be a patient living with a rare disease in the healthcare system.
Learn more about Vula Mobile on the Horizon Prize website (https://solve.mit.edu/challenges/horizon-prize-2022/solutions/64409), or by visiting the company’s website (https://www.vulamobile.com/).
Congratulations to these five finalists! The winner of The Horizon Prize will be announced on Tuesday, September 20. Follow along on Horizon’s Facebook and Instagram and visit the MIT Solve website for more updates!
Interested in learning about last year’s solutions and finalists? Read the blog below: