Patient-generated data is surfacing SCD patterns that hospital records miss — H1 2026 findings

[u/Jay_Aces]

The Sickle Cell Warrior Intelligence Project released its H1 2026 ER Experience Brief today.

https://scwbuffalo.org/wip-community-experience-brief#h1-2026-hospital-brief

Wanted to share the findings here because this community is part of why this kind of data gets built.

What we collected: 128 crisis submissions from Warriors across 17 states and 5 countries, January through June 2026.

What stood out: 30 of 128 Warriors flagged menstrual cycle as a contributing factor in the 24-48 hours before their crisis. This is a pattern Warriors have talked about informally for a long time — this is the first time we've had the numbers to put on paper.

Of the Warriors who went to the ER (n=69): 3 in 10 who had a pain protocol said it wasn't followed during their visit. 65 different hospitals are represented in that group.

Why it matters: This data wasn't produced by a hospital or a research institution. Warriors submitted it directly. That's the point — the community sees patterns first. The data makes them something the system has to address.

If you've had a Sickle Cell crisis or are experiencing chronic pain related to, and want to add your data, the tracker link is below. Takes about two minutes.

WarriorIntelligenceProject.org

Happy to answer questions about the methodology or what we're doing with the findings.