Nancy Yu co-founded AllStripes with a vision in mind: to unlock more treatment options for those with rare diseases. In Part 1 of our interview, Patient Worthy sat down with Nancy to discuss AllStripes, rare disease research, and the push towards easier and more targeted drug development. Today, we discuss the different conditions and patient communities on AllStripes; the obstacles and accomplishments of developing this platform; and the future of AllStripes and rare disease research.

Different Conditions on AllStripes

Currently, there are approximately 50 different rare disease programs listed on AllStripes. These include, but are not limited to:

• Achondroplasia
• CDKL5
• Cystinosis
• GM1 gangliosidosis
• Kabuki syndrome
• Morquio A and B
• NPC
• Paroxysmal nocturnal hemoglobinuria (PNH)
• Sickle cell disease
• Wilson disease

Nancy explains that the team is working to add new conditions each month, and hopes to at least double the amount of conditions over the next year. Most recently, AllStripes launched programs for Batten disease, dermatomyositis, Fabry disease, and Pompe disease. As the platform grows, Nancy hopes to extend into additional therapeutic areas.

Feedback

I was personally drawn to the fact that AllStripes offers its services for free to patients and their families, creating an easily accessible avenue for contribution. I asked Nancy what kind of feedback she had received from current users and partners in the sciences, and what parts of the platform they felt were most helpful. She shares:

What I heard most from patients was about the ease of the process. Many families were surprised that they didn’t have to upload their own records and we did it all for them. AllStripes offers ease, convenience, speed, and the ability for them to contribute to research right away. It also provides families with a lot of hope. Even if there isn’t drug research into their condition, they can jumpstart a community and contribute to its success.

These contributions also help life science companies and researchers; in fact, some data has even supplemented partner submissions to the FDA. Nancy explains:

We keep all of our information in a regulatory-grade database. This requires a ton of work on our side, but we can provide a previously unseen depth of information. Some companies look at surveys or focus groups but need the data from medical records, or want to combine data with the patient perspective. We offer that information backed by real patients.

AllStripes: Roadblocks and Accomplishments

The journey to creating such a helpful and robust tool, of course, has not always been easy. For example, it often takes time and investment to structure all of the information. More so, it can be difficult to balance all of the necessary ingredients to build cutting-edge data science tools, from constantly changing technology and automation to finding team members with the right skillset. Nancy explains:

We are constantly looking at how to increase the quality and the speed. And on top of that, we’ve been working on growing our team across all of these cross-functional areas, like patient engagement and customer engagement to life sciences. Doing all of that this past year during COVID-19 was both challenging and fun, but definitely not something that we’ve ever done before.

Perhaps the biggest challenge is not quite a challenge at all–but more of a learning opportunity. Nancy explains:

We want to support our users and communities at different points along their diagnostic, research, clinical journey and we’re still learning. How do we create even more value beyond medical values? What else can we do?

These questions drive Nancy and her team. Although they may not yet have the answers, they are relentless in their pursuit of patient empowerment. This has turned those roadblocks into accomplishments. AllStripes have presented insights through various posters and publications on over two dozen topics at a variety of conferences. Says Nancy:

What we don’t want to do is gather a lot of this information by asking for the community’s help, and then just sit on it. We really try to share these insights to spur research impact and make sure that everyone benefits.

Looking towards the Future

So what’s next for AllStripes? In August 2021, AllStripes raised $50M in Series B financing. Ultimately, the company will be using this financing to launch 100 new rare disease research programs. Nancy explains:

The way we look at jumpstarting new conditions is twofold. Either the patient community comes to us and says, ‘Hey, we think that there is a real need in natural history to set us up for success in terms of drug research,’ or researchers and drug companies say, ‘We need to answer these questions but existing research isn’t deep enough.’ Time is risk. So we want to accelerate treatments if data is available, or collect longitudinal information to see what has happened since birth, not just along the way. We take on any programs where we think there is impact to create.

Eventually, Nancy would love to open the platform to any condition or aspect of a condition that people can focus on–even if they’re not necessarily rare. Many conditions are becoming more and more subdivided over time. The focus on patient-centric research is more important than ever in the future of precision medicine.

Currently, AllStripes works with companies and patients in the United States, United Kingdom, and Canada. The company is currently working to expand, though there are challenges relating to privacy standards in other countries, as well as how to access and translate medical information. However, in the future:

We hope that any research program, whether from a life sciences company or university, would work with AllStripes to access information in a standardized way that is focused on research ethics.

Most importantly are the patients and families. AllStripes’ future focuses on encouraging families to participate in research, even if that is outside of the clinical trial spectrum. Nancy states that many patients believe that clinical trials are the only participation avenue, but now that isn’t true. In the end, she says:

Everyone can create an impact.

Learn more about AllStripes, or jumpstart your condition, here.