Sickle Cell Data Collection · Year 4
Your SCDC program shows where people with sickle cell disease live and how they use care. The 360 SCD Hub helps you reach those families, coordinate your partners and show results, in the report format your team already knows.
As programs move into year 4 of the 2023–2028 cooperative agreement, we're inviting state leaders to explore a shared hub that keeps that work running and connected.
Together, the SCDC states cover about half of the nearly 100,000 Americans living with sickle cell disease. Each built its own partnerships and data. A shared hub lets that work reach families and stay connected.
Your state data hub does the linkage. The 360 SCD Hub works on either side of it: bringing stakeholders together, and turning findings into outreach people can see.
Stakeholder engagement · State agency engagement
The Hub's role: keep every collaborator engaged between meetings.
Case definition · Data transfer and storage · Where are the data holes?
The Hub's role: complement your linkage. It never replaces it.
Put surveillance data to work · Improve health outcomes
The Hub's role: move from data to action, and show it.
The same sections, figure order, age bands and Key Terms as the CDC state pages. Three layers sit side by side, each labeled with its source and definition.
Example: Georgia, 2018 data year, as published on the CDC SCDC state data page. Each state's own published figures load here.
The measures state SCDC programs already publish on their own dashboards and briefs. Your definitions are kept and labeled, for example a state-specific 30-day readmission rule.
Filled from your state's de-identified, aggregated Hub activity. Hub engagement is always labeled as engagement, never as surveillance data.
The Sickle Cell Foundation of Arizona built the 360 SCD Hub through its HRSA-funded Sickle Cell Newborn Screening Follow-up Program. Arizona's SCDC program, led by Phoenix Children's with ASU's Center for Health Information and Research, counts the Foundation among its community partners.
SCFA's newborn screening follow-up program begins, with Arizona's clinical partners.
The 360 SCD Hub is built for families, caregivers and providers across Arizona.
Member Hub and tools, family and activity tracking, Community Support Zones and the Advisory Council.
The same system, with your own environment, partners and reports.
Each state works in its own space, with its own partner directory, records and reports.
Your program lead sees the whole state. Partner directors and staff see only their own organization.
Your clinical sites, community organizations and state agencies, set up ready to join.
Families, caregivers and outreach staff use the 360 SCD Hub app, connected to your state hub.
Baseline, state program and engagement layers, each labeled with its source and data year.
De-identified state totals can roll up into a shared national picture. Each state decides what it contributes.
De-identified by design. Reports show aggregates only, with small counts suppressed. What each state shares follows standard data-sharing agreements and protocols, built out together with your team. The 360 SCD Hub is independent of CDC and works alongside your SCDC program.
Straight answers on sharing, cost and privacy. Don't see your question? Ask it in the form below.
It can be shared. You don't need to build your own. The 360 SCD Hub was built with HRSA funding, so it is free and open by design. It can never be sold, and the software is shared openly under the grant for other programs to use.
A state starts from a working platform already used by Arizona families, outreach staff and hospital partners. There are two ways in:
The app itself has no license fee. It is grant-funded and free to share. What a state pays for depends on the path it chooses:
It is designed to fit inside a program budget, not to need a new grant. Because every state's partners and reporting are different, we send a short proposal rather than a one-size price. Tell us about your program below and you'll hear back within a week.
In the 360 SCD Hub app
Member information stays private and secure. Members sign in, see only their own information, and choose what they share. It is never sold or used for advertising.
In a state's Command Center
The Command Center works with program information and de-identified totals, not individual health records. How each state shares data will follow standard data-sharing agreements and protocols, built out together with your team.
No. Your surveillance data stays with your state's data team. A state report can show your published SCDC figures alongside the Hub's own de-identified engagement numbers, each clearly labeled.
Share what you're working on and what would help. We'll follow up to set a time to talk with your team.
Moses Akpan and the 360 SCD Hub team have your request and will be in touch soon.
Your request is below, addressed to Moses Akpan with the 360 SCD Hub team copied. Open it in your email app, or copy it.