A new collaboration and our vision for the future of genomics

A pilot project with EMD Serono

Today, we are excited to announce a collaboration with EMD Serono, the biopharmaceutical business of Merck KGaA, Darmstadt, Germany, in the U.S. and Canada. We are starting a pilot project, the goal of which is to help EMD Serono to enhance its research efforts by supporting its scientists as they develop potential new medicines, using Nebula’s database of anonymized genomic data to better understand the causes of diseases.

This collaboration has significant potential in accelerating scientific discovery and drug development for the benefit of patients. We are currently looking for lung cancer patients and offering a free high-coverage germline and tumor whole-genome sequencing. Importantly, we will give patients full access to their genomic data so that it can potentially be used to make better treatment choices. If you are interested in this study, please sign in and complete a survey (otherwise sign up first) that will determine if you fulfill the participation requirements.

Towards free personal genome sequencing

When we launched Nebula Genomics last year, we announced our goal to make personal genome sequencing free. Since then we provided low-coverage whole-genome sequencing to hundreds of people free of charge. In order to offer free sequencing to even more people, in particular, the more expensive high-coverage whole-genome sequencing, we have established collaborations with pharma and biotech companies that will sponsor sequencing in exchange for access to genomic data. Our collaboration with EMD Serono is the first validation of our model for sponsored sequencing.

While pharma and biotech companies are particularly interested in genomic data of cancer and rare disease patients, we believe that sponsored sequencing can also be made available to apparently healthy individuals. This has already been demonstrated by several large population genetics initiatives. For example, the currently ongoing sequencing of 500,000 samples collected by the UK Biobank is being sponsored by a consortium of pharma and biotech companies including Regeneron, AbbVie, Alnylam, AstraZeneca, Biogen, and Pfizer. We believe that as the cost of whole-genome sequencing continues to decrease, sponsored sequencing of large cohorts of healthy individuals will become increasingly common.

A universal platform for genetic research

At Nebula Genomics, we are building a platform that connects patients and consumers with researchers and incentivizes data sharing by ensuring equitable compensation, transparency, and security. Our platform can be used to gain data from various kinds of genetic studies.

  • Observational studies that aim to understand associations between genetic variation and disease in large populations (e.g. UK Biobank, FinnGen, Genomics Medicine Ireland). These are typically very large studies that enroll mostly individuals that are apparently healthy.
  • Observational studies of patients with specific medical conditions. These are typically smaller genetic studies with relatively narrow inclusion criteria.
  • Sequencing of clinical trial participants and return or results. Today, participants of clinical trials are often sequenced or genotyped. The generated genomic data can be used to guide the course of the ongoing clinical trial or for future studies. There is also increasing interest to return genomic data and reports to clinical trial participants.

The success of research depends on successful recruitment and sustained engagement of patients. We believe that this requires a platform that puts the patient at the center by empowering and incentivizing them to become more actively engaged. To this end, we give our users tools to explore their genomic data, we use blockchain to let them control who can access it, and we ensure that they are compensated fairly for contributing to research. We hope that by doing so we can elevate the users of our platform from patients to partners, which will drive participation and benefit biomedical research.

Engaging patient communities

Since our launch last year we have been growing our platform by offering personal genomics services to consumers as well as by engaging various patient communities and advocacy groups. For example, we established a partnership with Inspire, a company with a healthcare social network of more than 1.5 million patients and caregivers, representing over 3,600+ medical conditions, such as lung cancer, idiopathic pulmonary fibrosis, and neurofibromatosis. Many of Inspire’s members are actively engaged in their health and are constantly seeking for leading-edge treatment options, and are gathering and sharing information through the online community. “Over 90% of 3,400 respondents to an Inspire survey are interested in participating in research that involves genome sequencing,” said Richard Tsai, VP of Marketing at Inspire. “Our collaboration with Nebula is well aligned with our mission to accelerate medical progress by connecting patients with studies that will educate and empower them.”

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