We cure via decentralized micro-labs

Gene Fixer’s clubhouse conversation focused on building a decentralized micro-lab ecosystem that enables research for rare diseases to collect preliminary data and derisk the opportunity cost of unknown diseases. This is the only way we can scale research for over 7000 rare diseases just in the U.S. (NIH NORD, 2019). Here’s how dire the situation is:

• 29,000 diagnostic and medical labs in 2022 (IBSworld, 2021)

• The NIH funded grants breakdown based on the type of disease in 2020 (NIH, 2020)

  • $17.6B went into clinical research (preclinical and clinical trials)

  • $10B went into genetics research

  • $10B went into neuroscience research

  • $8B went into infectious diseases

  • $7.0B went into cancer

  • $5.9B went into rare diseases (< 0.002% of NIH funding)

And the funding mechanism is dire because it is hard to get funding for a rare disease when it does not affect many people and therefore the impact feels small. Most grants will fund $5-$20M for 5 years and in the best-case scenario, we might have 10 labs working on one rare disease.

We need a better plan, a better infrastructure, a better funding mechanism, a better business model to build more resources to do the research for the 30 million individuals affected by a rare disease. Some of the ideas around creating micro-labs or micro-CROs also included digital infrastructure to manage the data and data sharing.

Hackathons are a great way to get a lot of people to solve a problem. How about we take university classrooms and convert a biology course studying protein trafficking and train them to solve protein trafficking diseases? What if these classrooms became dozens of hackathons throughout the U.S.? And what a better way to learn about biology is by solving the problems of biology. These universities don’t have to be the Harvards and Stanfords, but liberal arts colleges that have the infrastructure to do cell culture, imaging, microbiology. We can enable so many more people to the conversation and truly decentralize the efforts funded by the NIH.

To hear a clip of the Gene Fixers on this, click here. If you would like to collaborate please reach out via [email protected] or through Contact Us.