The biggest breakthroughs in medicine are often delayed—not because the science isn’t ready, but because the funding isn’t there. Treatments for rare diseases are frequently shelved, not due to lack of progress, but because they don’t offer billion-dollar returns. More than 95% of rare diseases still have no approved treatment, and the average time to bring a new drug to market exceeds 12 years, with costs often climbing beyond $2.6 billion. 

Researchers spend up to 42% of their time writing grants instead of doing actual research, while over 50% of biomedical research remains inaccessible behind paywalls and restrictive licenses.

This is the status quo of traditional science. It is a system built on slow timelines, institutional control, and financial gatekeeping.  Funding decisions are often influenced by politics, prestige, or institutional favoritism not necessarily by urgency or scientific merit. Promising treatments can be deprioritized or shelved entirely due to commercial disinterest. Even when breakthroughs occur, they are often locked away in intellectual property systems that make them inaccessible to those who need them most.

This fragmented, exclusionary model is not just inefficient, it actively holds back progress.

But a new approach is challenging this model: DeSci (Decentralized Science). It offers an open, community-driven alternative where research is faster, more transparent, and more inclusive.

Here’s how the two systems compare and what we stand to gain when research becomes a public endeavor.

Traditional Funding Bottlenecks Are Slowing Science Down

In traditional systems, research funding is highly centralized. Government agencies like the National Institutes of Health (NIH) have approval rates below 20% in many areas. This means most promising ideas never get off the ground. Meanwhile, researchers devote a significant portion of their time to chasing funding rather than conducting experiments. The application process itself is time-consuming, and funding decisions can take months, sometimes even longer, leaving critical research stuck in limbo. Often, what gets funded is influenced by politics, institutional priorities, or trends, rather than scientific urgency or patient need.

In contrast, DeSci reduces these barriers by enabling researchers and communities to raise funding directly through decentralized platforms. There’s no need to wait for institutional approval or navigate bureaucratic systems. Curetopia, for example, raised $1.77 million from over 1,000 individual contributors to support rare disease research, without relying on traditional grant systems. This decentralized model enables faster project starts and ensures funding aligns with real-world impact, not bureaucracy.

‍Siloed Research Creates Duplication and Delays

Traditional science often operates in silos. Labs compete for recognition, and research findings are locked behind paywalls. More than 50% of biomedical research is inaccessible due to restrictive licensing or journal subscriptions. Data is often fragmented across institutions, making it difficult to reproduce results or build on existing work. Researchers may unknowingly duplicate studies that already exist, wasting valuable time and resources.

This lack of transparency and coordination slows scientific progress. In contrast, DeSci supports open access by default. Protocols, data, and findings are shared publicly from the beginning, fostering collaboration instead of competition. Instead of working in isolation, contributors build on each other’s discoveries, accelerating breakthroughs and reducing inefficiencies. In this model, collaboration becomes the standard, not the exception.

In Traditional Trials, Patients Are Test Subjects, Not Stakeholders

In conventional clinical trials, patients are often treated as passive participants. They contribute data, undergo testing, and follow protocols but rarely have any influence over how research is designed, prioritized, or evaluated. Their lived experience is undervalued, and they have no visibility into outcomes or ownership of the scientific progress they help enable. Once the trial ends, so does their involvement.

DeSci challenges this model by making patients central to the research process. In decentralized research communities, patients can contribute beyond participation helping shape study design, define meaningful outcomes, and even influence funding decisions. In our rare disease program focused on AARS2 Deficiency, patient families played an active role in co-designing the research and shaping its direction, an approach that reflects the broader values of the DeSci movement. Rather than being treated as subjects, patients become collaborators.
Their voices are not only heard but embedded into the structure of the scientific process itself.

Drug Development Is Too Slow and Too Expensive

The traditional path to drug development is notoriously slow and expensive. On average, it takes over 12 years to bring a new drug to market, with total costs exceeding $2.6 billion, according to the Journal of Health Economics. Much of this cost comes not only from the development process itself, but from the layers of regulatory complexity, long clinical trial timelines, and the high rate of failure along the way.

This approach often sidelines treatments for conditions that don’t promise high commercial returns. Rare diseases, in particular, are routinely deprioritized not because the science is lacking, but because the traditional model sees them as financially unviable.

DeSci creates space for new models of discovery and development. By removing the reliance on centralized gatekeeping and allowing open collaboration across a global network of researchers, technologists, and patient communities, decentralized science opens the door to faster and more diverse pathways toward therapeutic progress.

These approaches include, drug repurposing, high-throughput screening, AI-assisted discovery, and decentralized clinical trial models. By combining technical innovation with transparent, community-led coordination, DeSci can accelerate timelines, reduce overhead, and direct efforts toward diseases that are overlooked in traditional pipelines.

Projects aligned with DeSci principles, including some pioneering rare disease research initiatives, are already demonstrating that it’s possible to identify new leads, mobilize funding, and design research frameworks without billion-dollar overheads or decade-long delays.

When Research Becomes Public, Collaboration Moves Faster

In traditional science, working together isn’t always easy. Research often happens in silos. Teams compete instead of collaborate. People are rewarded more for publishing papers or getting big grants than for solving real problems.

This slows everything down. Ideas don’t move quickly, important knowledge gets stuck, and researchers often end up repeating the same work without knowing someone else already did it.

DeSci changes that. It focuses on what people contribute,not their job title or where they work. Whether someone helps with coding, data analysis, trial design, or community outreach, their contribution matters and is visible.

In DeSci, people from different backgrounds like scientists, patients, developers, funders, can work together in open communities. Everyone brings something to the table, and projects grow faster because more people are involved from the start.

Some projects already doing this include:

• VitaDAO, which supports research on aging through community voting.
  
  
• Molecule Protocol, where researchers can share and license their ideas without relying on institutions.
  
  
• LabDAO, which connects scientists to lab tools and services around the world.
  
  
• Curetopia, which focuses on rare diseases and shows how research can move faster when it’s community-led.
  

When research becomes open and shared, it moves faster. People work better together, and the results reach those who need them sooner.

Final Thoughts: Science That Serves People

The current science system doesn’t always work for the people who need it most. Rare diseases stay underfunded. Patients are left out of important decisions. Researchers waste time dealing with paperwork and politics instead of doing science.

DeSci offers a better way. It helps research get funding faster. It makes science open instead of hidden. It brings people together, from patients to scientists to work on real problems.

This isn’t just a new idea. It’s already happening. Communities are building research projects, sharing knowledge, and moving faster than traditional systems ever could.

Science shouldn’t be limited to a few institutions or slow processes. It should be something everyone can be part of something driven by purpose, not prestige.

That’s what DeSci is doing. And it’s only the beginning.

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