Empowering Rare Disease Patients with Technology: Why the "RareWear" Initiative
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In February of 2020, we at Rare Genomics launched the RareWear Initiative. This program connects rare disease patients with medical device, health monitoring, and wearables companies that contribute technology to empower these patients, their families, and their clinicians. In this blog, we discuss the “Why” behind the RareWear program, and our goals to draw attention and resources to this rare disease patient need.
Empowering Rare Disease Patients with Technology: Why the “RareWear” Initiative
Traditionally, the intersection of rare disease care and medical device/monitoring technology has been an underserved one; given the diagnostic and therapeutic challenges of rare disease, monitoring has often taken backstage. However, it is coming to light that the unique nature of a rare disease patient requires a more personal, at-home touch. These are patients with complex stories and journeys, patients who have taken an average of five years and hundreds of doctor visits to even obtain a diagnosis. Given the heterogeneity and unmet need of rare disease - with 7,000 diseases known, and only 5% of which are treatable - many patients have unique condition monitoring and management needs. But, because individual rare disease populations are small, they may be overlooked or neglected by the healthcare technology community.
There is a critical requirement to better understand the monitoring and medical device needs of rare disease patients, and to connect patients and their families to technology that can address these needs. From activity, sleep, and side effect tracking, to body vitals measurements, respiratory, and cardiac monitoring, the known needs of rare disease patients are many. At RG we hope to bring attention and resources to these needs, for the enablement of all rare patients.
Some of the many needs identified from an RG survey of rare disease patients - RG will partner with developers of technology in these, and other spaces, to empower these patients.
Rare disease patients are ideal candidates for monitoring and wearable technologies
Importantly, it is not just the diverse nature of the conditions and effects of rare disease that make monitoring and wearable devices a good match - it is the patients themselves. Rare disease patients are a highly motivated group, ready to deeply engage with technology and platforms for condition management.These are patients who have already gone through significant challenges in obtaining care, and are determined to find new approaches to getting better. Often, given many rare disease patients are children, this high level of engagement is also at the family-level with parents and siblings playing a role in the care unit. Providing this unit - along with the clinical care unit - a way to engage with monitoring and managing a rare condition can be game-changing for patients.
Further, rare disease patients are a fragmented population. They are often located distant from the experts who may best help them through the patient journey, and logistics prevent them from seeking guidance in a convenient manner. Given this, we believe technology will enable rare disease patients to better communicate with their clinical care specialists, and have a better understanding of their own condition even when they are not in an in-person care setting.
Monitoring and wearables use is becoming integral in all aspects of rare disease research and care
The specific uses of medical device and monitoring technologies in rare disease are far-reaching. Today, many research, clinical, and pharmaceutical organizations are making use of monitoring device technology to better understand the conditions of and best practices for rare populations. For example, a recent study out of the Scripps Research Institute conducted on Pompe Disease has evaluated the use of activity trackers to understand patient mobility metrics. Meanwhile, clinical practitioners are looking to use devices to monitor their patients out of the hospital to identify and potentially predict events. Indeed, mobile health technologies have immense potential to revolutionize rare disease care management, and enable a better understanding of rare disease for these clinicians. Finally, pharmaceutical companies are beginning to understand the value of patient monitoring in rare disease clinical trials - doing so brings patient-centricity, and enables these groups to learn from the collective experiences of rare disease patients. In the end, the above activities will enable patients to gain a more comprehensive understanding of their condition and consult clinical practitioners for intervention in a more timely manner, and access the most effective treatments for their disease. RG is looking to work with research, clinical, and pharmaceutical companies across rare disease areas to advance these activities in the service of patients.
Moving RareWear forward: Now and Tomorrow
By listening to, calling attention to, and connecting rare disease patient needs we hope to bring new light and resources to the intersection of device technology and the rare disease community. We hope to publish stories of how patients have benefited from device technology, and show the various needs of these patients. Along the way RG patient advocates will work to share this program with the patient and medical communities, and RG partnership team members will continue to bring on new commercial allies of the rare disease space. Whether you are a patient, a relative, a physician, a researcher, or a medical technology company, we hope to work with you (and learn from you!) as we push to empower the rare disease community with medical device, monitoring, and wearable technology.
If you are a patient looking to be connected to partners of the RareWear Initiative and receive gifted device technology, please visit the RareWear website.
If you are a partner who would like to engage with Rare Genomics in the RareWear initiative please contact us here.
Shoman Kasbekar is a member of the Rare Genomics Strategic Partnerships team, and Director of the RareWear program. His background is in Biomedical Engineering, and he has enjoyed professional experiences from the earliest stages of the biotechnology of genome editing to the business of healthcare delivery.
Aanchal Shah is a passionate Regulatory Affairs Professional in the medical device and pharmaceutical industry. Being a science enthusiast, she supports bringing in advanced medical therapies and is a part of the Rare Genomics Strategic Partnerships team since 2018.
Nick Shea is a member of the Rare Genomics Strategic Partnerships team and has volunteered with the organization since 2018. He currently works in strategic partnerships at Color helping launch population genomics programs.