Why We Decided to Partner With a Research Platform

We first learned about AllStripes — a research platform designed specifically for rare disease — in the summer of 2019, when I was able to trial the platform and process on behalf of my daughter. My favorite part was how easy it is: AllStripes did all of the work to pull together my daughter’s records, and now that her records are on the platform, I can easily access them.

As an organization, we are impressed by how much the AllStripes’ values and policies align with ours. These include:

– patients own their own data

– the protection of patient data privacy and security is critical

– collaboration is key

I hope our community understands how crucial data is in ultra-rare disease research. Because there are fewer patients with PROS conditions than, say, patients with diabetes or cancer, collaboration and pooling our patient data is key to moving progress forward.

By choosing to participate in research, I believe we are choosing hope for our current and future patients. We need more and better treatment options than the options available now. Making the choice to participate in research is an active choice. It’s a choice that says the current options are not good enough and that our loved ones deserve better.

We believe that collaborating with AllStripes can lead to an improved understanding of the natural history of CLOVES and PROS, and pave the way for the discovery of additional non-surgical treatment options — that are safe and effective, with limited side effects — for people with CLOVES and PROS. Through our partnership, I’ve learned that AllStripes is a transparent, inspired, collaborative place, with a staff that’s hopeful and empathic.

We’re excited to continue our collaboration into 2022 and beyond. Together, we can do great things for the PROS and CLOVES community. – Kristen Davis, Executive Director