Rare Genomics Institute Marks International Rare Disease Day With New "RareWear" Program

The Rare Genomics Institute, a nonprofit patient advocacy group, announced it will launch its new RareWear program, marking 2020’s International Rare Disease Day. The program works with patients who have rare diseases to connect them with medical device providers specializing in technology for monitoring and managing conditions. Once matched, patients will receive a device for free from medical device technology providers Bodimetrics, Biotricity, or Strados Labs.

In the United States, a disease is classified as “rare” if it affects fewer than 200,000 people. “The total number of Americans living with a rare disease is estimated at between 25-30 million,” according to the National Institutes of Health.

“Traditionally, the application of medical device, monitoring, and wearable technology to manage rare diseases has been an underserved space, and this initiative to bring patients and technology providers together fills a much-needed gap,” said Jimmy Lin, MD, PhD, founder and president of Rare Genomics Institute.

In the first round of the program, the institute’s advocacy team will match 100 patients to device technology companies. The institute hopes to widen its scope in the future, bringing more patients into the program and collaborating with additional partners. Current partnerships will assist patients with cardiac, respiratory, neuromuscular, and ophthalmologic conditions, among others. “Devices will be provided based on patient need and availability through the duration of the program,” the institute’s website states.

The program will allow patients, families, and clinicians to monitor relevant metrics in real time and utilize information gleaned from the technologies to better target treatments. Additional patient compensation beyond the free medical device is not provided by the Rare Genomics Institute, which is a volunteer-driven organization.

“Working with RareWear is part of Biotricity's focus on expanding its current deep data sets to drive additional insights for predictive monitoring in rare disease patients,” said Waqaas Al-Siddiq PhD, CEO and founder of Biotricity.

RareWear will also partner with Inspire, a health-specific social network, to enable patients participating in the program to share their experiences within support communities.

“We are currently speaking with partners in the body vitals monitoring, activity tracking, sleep tracking, seizure monitoring, and side effect tracking spaces - among more,” said Shoman Kasbekar, director of the RareWear Program, in an e-mail exchange with The American Journal of Managed Care^®.

The impetus behind the program stemmed from general heterogeneity and unmet needs of the rare disease community, “with 7000 diseases known, and only 5% of which are treatable - many patients have unique condition monitoring and management needs,” the institute stated in a blog post. Due to the small number of patients with rare diseases, the healthcare technology community may overlook this population when developing new technologies.

Because the population is so small, it is often fragmented, and access to specialists can be limited. “Logistics prevent [patients] 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,” the institute said.

When it comes to safeguarding patients’ data, Kasbekar stresses protocols in place at the Rare Genomics Institute ensure access to data is controlled and any data collected is secured. All partners participating in the program are HIPAA compliant.

“As part of the program, appropriate consent to collect and use device data must be obtained by our partners from the patients receiving their devices,” Kasbekar said. “Rare Genomics is not engaged with the collection of device data from patients, so any regulations with respect to restrictions on data collection must be adhered to by our partners.”

According to RareDiseaseDay.org, over 300 million people (3.5%-5.9%) worldwide currently live with more than 6000 unique identified rare diseases. In addition, “72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.”

Patients interested in applying for the program can register here.