Dashboards & Data
Sickle cell disease has been under-counted for decades. These are the dashboards we use to change that — and the reason your data, shared safely, matters.
One entry is a symptom.
Ten thousand are evidence.
When a family logs a pain crisis in the Hub, it helps that family at their next appointment. When thousands of families log them, it becomes something a health system, a legislature, and a funder cannot ignore.
A tracker entry is first and foremost for you — pain, meds, mood, school and work days lost, mapped where it actually happened, ready to show your care team.
Stripped of anything identifying and combined with others, those entries reveal what a single clinic visit never shows: what happens in the weeks between visits.
Most states still run no sickle cell surveillance at all. Where there is no data, there is no funding case and no policy case — the gap itself is the advocacy story.
Aggregated views return to the community as public dashboards, to clinicians as context, and to our partners as the evidence behind every ask we make.
The twenty minutes you get are not the whole story.
Sickle cell care is shaped by what happens between appointments — and most of that never reaches the chart. These dashboards, and the trackers behind them, are built so it can.
- See what patients report between visits, in their own words and their own timeline
- Understand the Arizona picture — occurrence, reach, and where care is thin
- Compare Arizona against the national baseline, including states collecting nothing
- Bring your service line into the AZ Healthcare Community Council for Sickle Cell Disease
The dashboards
State, national, scored, and convened — each answers a different question, and together they make the case.
The occurrence, our impact, and the Arizonans we reach — statewide. Newborn screening, community zones, and where the Foundation is actually working.
Open the dashboard →
The scope, the burden, and the Americans we reach — surveillance, screening, and access to care nationwide. Puts the Arizona numbers in context.
See the national picture →
Scores a community on the SCD burden, whether people can actually get care, and who is fighting for them — from verified federal sources. Every figure carries a provenance flag, and where a state collects nothing the card says so. Powered by Force for Health® Systems.
Explore the scorecard →
Arizona's hospital and health-system leaders, aligning sickle cell care across the state — so the data leads somewhere, and the same patient meets the same standard in every ED.
Meet the Council →The reading behind the numbers
Dr. Rob's sickle cell writing, the CDC source library, and the Prepared Patient work — the material these dashboards are built on.
What we do — and never do — with your data
Shared data only works if the sharing is safe. This is the standard we hold ourselves to.
Every entry counts. Literally.
Join the 360° SCD Hub free — and help build the evidence base sickle cell has never had.
