ONCE UPON A GENE - Episode 076 - AllStripes: Jump Start New Research for Your Rare Disease with Caitlin Nichols
April 13th-15th, Finding Happy podcast host, Sinéad Quinn, is hosting a special three night virtual event, Stronger Together. Grab your seat!
Caitlin Nichols is the Scientific Affairs and Research Manager at AllStripes— the first and only research platform dedicated to rare diseases. They make it easy for patients to contribute to new treatment studies from home. They do the work to collect, analyze and de-identify medical records to help power faster and better drug development. They translate medical data into actionable insights to unlock new treatments for rare disease.
EPISODE HIGHLIGHTS
What is AllStripes and how did you become involved with the organization?
AllStripes Research is a medical data science company focused on rare disease. One of the co-founders was diagnosed with a rare condition, neurofibromatosis type 2, and with his background in tech and building customer-facing products, he was struck by the lack of resources in rare disease. He developed AllStripes to help families and patients of rare disease to participate in research and accelerate the speed of research to get new treatments. I have always been interested in rare and genetic conditions, majoring in molecular biology in college and moved on to my doctorate in cancer genetics. At AllStripes, I work on the research team and it's been a pleasure to use my scientific training and be introduced to so many people in the rare disease community.
How do patients and advocacy groups sign up with AllStripes?
If someone is interested in starting a community for a condition not on the platform, they can email us at community@allstripes.com and fill out a survey to provide information on the size of the community and its needs. On the website, we have a list of the patient communities we currently have where a patient can sign up.
For ultra-rare or diseases without an official advocacy group formed, can they submit to the platform when there aren't a lot of known patients?
For ultra-rare diagnosis, we want to learn about new conditions because one of our goals as a company is not just to accelerate ongoing research, but to jump start new research interests.
What are you most excited about for AllStripes?
I'm excited that in my current role I'm helping to coordinate the publications we're getting out, sharing data with the scientific community. This year we're helping to get a condition added to a newborn screening panel which will help patients and families get a diagnosis sooner and get resources sooner. We're also looking at partnerships with a large national research organization to underscore why it's important for patients to get a diagnosis sooner. We have a goal to launch 100 conditions by the end of the year, which is a lofty goal, but we're excited to serve as much of the rare community as possible. If anyone wants to talk with us about the research we're doing or how we can help with a specific rare disease community, they can reach out to research@allstripes.com.
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