Built for cleft and craniofacial programs

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.

Nguyen T., 6 years old Treatment matrix
Completed In age window Not yet due Missed window
  • 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.

  • 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.

  • 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.

  • 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.

Treatment matrix for a 6-year-old patient: specialty (rows) by age band (columns), with four cell states.
Specialty Prenatal0–2 weeks3–6 months9–18 months2–5 years6–11 years12–17 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.

  • Lifetime patient record

    Demographics, parents, family history, consanguinity and comorbidities. Prenatal cases are registered before birth and converted when the baby arrives.

  • Treatment matrix

    Specialty against age band, with procedures auto-suggested for the patient's current age and filtered to your specialty.

  • Age windows and alerts

    Per-procedure tolerance measured in months. Anything outside its window is flagged automatically and escalated to a coordinator.

  • Anatomical diagrams

    Kernahan-Stark and Tessier classification marked directly on the diagram. The diagnosis code is derived, not typed.

  • Dynamic forms

    A JSON-schema form engine. Administrators build forms that match your existing paper, with no code and no release.

  • Medical image library

    Albums per procedure, SHA-256 hashed on upload, envelope-encrypted at rest, and served only through short-lived signed URLs.

  • 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.

  • Specialty exams

    Orthodontics, pediatric dentistry, speech evaluation and ENT each get their own structured form set and their own history view.

  • 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.

  • Reports and export

    Demographics, diagnosis mix, and on-time completion rates, exported to Excel for research, funders and ministry reporting.

  • 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.

  • 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.

  • Hospital server

    On-premises, behind your own firewall. Nothing leaves the building, and clinical work does not stop when the internet does.

  • Your own cloud

    Any VPS, any provider, any country. The whole stack is containerized, so a new environment comes up in an afternoon.

  • 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

Comparison of spreadsheets, general EMR systems and CleftCare across eight criteria.
SpreadsheetGeneral EMRCleftCare
20-year care timeline NoManualAge-band matrix
Multi-specialty by design NoPartialCore design
Age-window alerts NoNoTolerance in months
Kernahan-Stark and Tessier NoNoBuilt in
Matches your paper forms By handFixed templatesForm builder
Where data lives A laptopVendor cloudYour infrastructure
Audit trail on patient data NonePartialEvery read and write
Available in your language Not applicableRarelyEnglish and Vietnamese

Data and security

Built for health data, wherever you keep it

  • 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.

  • 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.

  • 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.

  • 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.

  • No hard deletes

    Patient records are soft-deleted and recoverable. A mis-click by a tired coordinator at 2am is not a permanent loss.

  • 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.

Email us

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.