A new partnership was just announced between YourDNA and DNA ID to connect rare disease patients to genetic researchers in a safe, secure, and more efficient way. The two companies aim to help patients with rare genetic diseases form communities where they can find support and the chance to further medical research on their condition.
DNA ID founder, Craig Calderone, said, “With the right tools and partnerships in place like YourDNA and DNA ID, we can empower rare disease patients along their entire journey. I’m really excited to see what a collective effort between our organizations can do to help accelerate research and treatments for the rare disease community.”
Over 7,000 rare diseases have been uncovered so far, each one affecting less than 200,000 people. A key challenge faced by these patients, and the researchers who study or treat them, is the small numbers of patients available for clinical trials. This new partnership aims to accelerate discovery for rare diseases by making it easier to bring patients with the same rare condition together and then help them find research projects related to their disease.
YourDNA, a media platform that raises awareness and understanding about advances in genomics, is a subsidiary of Aspect Health Inc., and is based in San Diego, California. Its community stakeholders range from genetic counselors to healthcare providers, clinicians, companies, charities, researchers, and more. Its platform offers access to expert research, quick guides on genetic genealogy research, video tutorials, and mentoring.
DNA ID, meanwhile, accelerates treatment discovery by “creating an open access data platform that puts control back in the patient’s hands” through patient-reported outcomes, passive data collection, patient registries, and gathering genomic and digital health data. These data, the company said, provide a more complete picture of real world evidence.
On DNA ID, patients opt-in to research studies where they can anonymously share their health information, including DNA results. Then they can participate and contribute to advancements in medical research, as well as receive compensation for their participation. The company already has communities for multiple sclerosis, lupus, Duchenne muscular dystrophy (DMD), sickle cell anemia, spherocytosis, and epilepsy. Participants can also help start new communities.
In June of this year, YourDNA and Cure Rare Disease (CRD) announced a partnership to raise awareness of DMD and to advance genomics. CRD is a nonprofit biotechnology company that forges collaborations between researchers and clinicians to develop customized treatments for rare genetic disorders, including DMD.
The company was founded by Rich Horgan, a Blavatnik scholar at Harvard University. Horgan’s family has been afflicted by DMD across three generations, including his younger brother. Hogan’s company is now advancing the science to develop a therapeutic treatment for the disease, as well as several other rare diseases. CRD-associated researchers have already discovered that the genetic traits exhibited by DMD are also present in a handful of other rare diseases, giving hope that their work will yield positive outcomes for many more patient groups.