Track 20 years of cleft care in one place.
CleftCare is a hospital information system for cleft lip and palate patients. It is built around the one thing general EMRs get wrong: a treatment journey that runs two decades across half a dozen specialties.
Tell us about your program and we will walk you through the system.
- Purpose-built for cleft care
- Runs on infrastructure you control
- English and Vietnamese
- In daily clinical use
The problem
Why spreadsheets lose cleft patients
A cleft repair is not an episode of care. It is a two-decade program, and the hardest part is remembering what has not happened yet.
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15–20 +
years of care per patient
From prenatal diagnosis to adulthood. Paper files get lost between departments, and spreadsheets fragment across laptops and coordinators.
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5–7
specialties, in parallel
Plastic surgery, orthodontics, ENT, speech therapy, nutrition and psychology. Each has its own schedule, and none has a shared view.
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30 +
time-critical interventions
Miss the alveolar bone graft window and the outcome is permanently worse. Nothing in a spreadsheet tells you a window is closing.
The core idea
A treatment plan is a matrix, not a to-do list
Every cell is the intersection of a specialty and an age band, and every cell knows whether it is done, due, early, or missed. That single idea is what the rest of CleftCare is built on.
| Specialty | Prenatal | 0–2 weeks | 3–6 months | 9–18 months | 2–5 years | 6–11 years | 12–17 years |
|---|---|---|---|---|---|---|---|
| Plastic surgery | Counseling , Completed | NAM , Completed | Lip repair , Completed | Palate repair , Completed | No procedure scheduled | Bone graft , Missed window | Orthognathic , Not yet due |
| Orthodontics | No procedure scheduled | No procedure scheduled | No procedure scheduled | No procedure scheduled | Monitoring , Completed | Expander , In age window | Braces , Not yet due |
| ENT and audiology | No procedure scheduled | Screening , Completed | Grommets , Completed | Review , In age window | Review , In age window | Review , In age window | Review , Not yet due |
| Speech therapy | No procedure scheduled | No procedure scheduled | No procedure scheduled | No procedure scheduled | Assessment , In age window | Therapy , Not yet due | Re-assessment , Not yet due |
| Nutrition | Feeding plan , Completed | Weight check , Completed | Weight check , Completed | Review , Not yet due | No procedure scheduled | No procedure scheduled | No procedure scheduled |
- Completed
- In age window
- Not yet due
- Missed window
An ENT clinician opening this chart sees only their own row. One toggle expands the full matrix for multidisciplinary team meetings. When a patient arrives, CleftCare suggests what is missing for their current age band, filtered to the specialty of whoever is logged in.
Capabilities
Everything a real cleft program needs
Not a prototype. This runs a working craniofacial center today.
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Lifetime patient record
Demographics, parents, family history, consanguinity and comorbidities. Prenatal cases are registered before birth and converted when the baby arrives.
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Treatment matrix
Specialty against age band, with procedures auto-suggested for the patient's current age and filtered to your specialty.
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Age windows and alerts
Per-procedure tolerance measured in months. Anything outside its window is flagged automatically and escalated to a coordinator.
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Anatomical diagrams
Kernahan-Stark and Tessier classification marked directly on the diagram. The diagnosis code is derived, not typed.
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Dynamic forms
A JSON-schema form engine. Administrators build forms that match your existing paper, with no code and no release.
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Medical image library
Albums per procedure, SHA-256 hashed on upload, envelope-encrypted at rest, and served only through short-lived signed URLs.
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Scan intake
Photograph a completed paper form and the fields come back filled in for review. Optional, off by default, and you choose the provider.
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Specialty exams
Orthodontics, pediatric dentistry, speech evaluation and ENT each get their own structured form set and their own history view.
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Scheduling and coordination
Worklists, a month calendar, recall reminders, and escalation when a patient stops showing up, the most common way cleft cases are lost.
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Reports and export
Demographics, diagnosis mix, and on-time completion rates, exported to Excel for research, funders and ministry reporting.
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Access control
TOTP two-factor, role-based permissions, department-scoped rows, and a tiered session lock so a shared workstation is not a shared login.
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Full audit trail
Every read and write of patient data is logged with actor, entity and diff. Retention is a config value, not a hard-coded assumption.
Deployment
Runs where your patients are
There is no CleftCare cloud to sign up for. Your deployment runs on infrastructure you control, which means you decide where every record lives.
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Hospital server
On-premises, behind your own firewall. Nothing leaves the building, and clinical work does not stop when the internet does.
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Your own cloud
Any VPS, any provider, any country. The whole stack is containerized, so a new environment comes up in an afternoon.
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Single-clinic install
One machine, local PostgreSQL, and no dependency on the internet beyond your own network. Built for small programs and outreach sites.
You pick the country your data lives in. That is what makes local health-data rules such as GDPR, HIPAA and their equivalents something you can actually satisfy.
Comparison
How cleft programs track patients today
| Spreadsheet | General EMR | CleftCare | |
|---|---|---|---|
| 20-year care timeline | No | Manual | Age-band matrix |
| Multi-specialty by design | No | Partial | Core design |
| Age-window alerts | No | No | Tolerance in months |
| Kernahan-Stark and Tessier | No | No | Built in |
| Matches your paper forms | By hand | Fixed templates | Form builder |
| Where data lives | A laptop | Vendor cloud | Your infrastructure |
| Audit trail on patient data | None | Partial | Every read and write |
| Available in your language | Not applicable | Rarely | English and Vietnamese |
Data and security
Built for health data, wherever you keep it
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Data residency is your decision
Your deployment sits in the country you chose, on hardware or a cloud account you own. No cross-border transfer you did not ask for.
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Encrypted medical images
Per-file AES-256 envelope encryption. The master key never lives in the object store, and images are served only through short-lived signed URLs.
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Complete audit trail
Every read and write of patient data is recorded with actor, entity and a diff of what changed. The retention period is yours to set.
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Least privilege by default
TOTP two-factor, role-based access, and row-level scoping by department, so a clinician sees the patients they are responsible for.
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No hard deletes
Patient records are soft-deleted and recoverable. A mis-click by a tired coordinator at 2am is not a permanent loss.
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No lock-in on your records
The database runs on your server, so a complete dump is always within reach, and reports export to Excel. Leaving is never a data loss event.
These are controls, not certifications. CleftCare gives you what you need to meet GDPR, HIPAA or your national health-data law. Meeting them still depends on how your deployment is configured and operated, and the documentation covers what that requires.
FAQ
Questions people actually ask
What is CleftCare?
CleftCare is a hospital information system for managing cleft lip and palate patients. Unlike a general EMR, it models the treatment plan as a two-dimensional matrix of specialty against age band, so a single patient's care can be tracked across plastic surgery, orthodontics, ENT, speech therapy and nutrition simultaneously over fifteen to twenty years.
How does a program get started with CleftCare?
Write to us and describe your program. We look at how your center works today, what your treatment protocol looks like, and what infrastructure you have available, then set out what a deployment involves. There is no self-serve signup, because every deployment runs on infrastructure the hospital controls, which is a conversation rather than a checkout.
Can we see the system before committing to anything?
Yes. Get in touch and we will demonstrate CleftCare with sample data covering prenatal registration through adolescent orthognathic planning, so your clinicians can judge it against cases they recognize rather than a generic tour.
Where is patient data stored?
On infrastructure you control. Patient records live in a PostgreSQL database and object storage that you provision, in the country you choose. There is no CleftCare cloud, no shared tenancy, and no telemetry reporting back to us.
Does CleftCare send patient data to AI services?
No, unless you turn it on. CleftCare works entirely without any AI service. One optional feature, scan intake, sends a photograph of a paper form to a third-party model to pre-fill fields, and it is disabled by default. You configure the provider, or leave it off and enter forms by hand.
Can CleftCare be used for GDPR or HIPAA-regulated data?
CleftCare provides the technical controls those regimes require: encryption at rest, access control, audit logging, and full control over data location. Compliance itself depends on how your organization deploys and operates the system, which is a responsibility no self-hosted software can take on for you. The documentation sets out what a compliant deployment involves.
What infrastructure does it need?
A Linux server with Docker, PostgreSQL, and any S3-compatible object storage. A small program runs comfortably on a 4GB virtual machine. Deployment, backups and TLS are set up on hardware or a cloud account that belongs to your organization, so the running system is never dependent on us staying reachable.
How does the specialty and age-band matrix work?
Each cell is one specialty at one age band and holds zero or more procedures. Every procedure carries a tolerance in months, so CleftCare can classify each cell as completed, in window, not yet due, or missed. Clinicians see their own row by default and expand the full matrix for multidisciplinary meetings.
Does it handle craniofacial conditions beyond cleft lip and palate?
Yes. The diagnosis catalog, specialties, age bands and procedure templates are all configurable, and the Tessier classification covers craniofacial clefts generally. Programs treating related conditions can extend the catalog without touching application code.
What languages is the interface available in?
English and Vietnamese today. Every interface string is held in a translation file rather than buried in the code, so adding a language is a translation task rather than a development project. Tell us which language your program needs.
Who builds CleftCare?
A small software team that built it for a working craniofacial center and now makes it available to other programs. Deployment and support are handled by the same people who wrote the system, so a clinical question does not have to travel through a support tier to reach someone who can answer it.
Get in touch
Tell us about your program
If you run a cleft or craniofacial service and want to see CleftCare working against real workflows, write to us. We will walk your team through the system, answer clinical questions directly, and set out what a deployment for your center would involve.
Or write directly to hello@cleftcare.org
Useful to include
- Your center and the country it is in
- Roughly how many cleft patients you follow
- Which specialties take part in the program
- What you use to track patients today
Every message gets a reply, usually within two working days.