Patient List

The Patient List is the primary demographic and clinical reference view. It presents a sortable, filterable table of all patients registered at a given HTC.

Core Columns

  • Most recent diagnosis (for patients with multiple hemophilia diagnoses)
  • Severity level
  • Current age
  • Primary HTC assignment
  • Current treatment plan displayed in hierarchical format: tolerization status, prophylaxis type (primary, secondary, or on-demand), product in use, and a complete treatment plan summary

Optional Columns

Users can enable additional columns via checkboxes:

  • Date of most recent clinic visit
  • Date of most recent HJHS and number of HJHS records
  • Inhibitor test information
  • Last treatment plan change date
  • Last genetics record date
  • Adherence status calculation for patients on prophylaxis

Filtering and Sorting

Every column supports independent filtering with multi-select capability. Filters function like a spreadsheet: users can combine criteria across columns (e.g., severe hemophilia A patients under age 10 on prophylaxis with no clinic visit in 12 months). Age group filtering supports custom groupings. Multiple HTC selection is supported for national-level users.

Navigation

From any patient row, users can click through to the Patient Timeline for a longitudinal visual of that patient's record.

 

Patient Timeline

Hemophilia is a lifelong condition. Patients may be on treatment for decades, with multiple regimen changes, product switches, and evolving clinical needs over time. The Patient Timeline provides a visual longitudinal view of each patient's complete history in CBDR, displaying treatment plans, product usage, bleed events, outcome assessments, and clinic interactions on a single timeline.

This makes it possible to see a patient's full treatment trajectory at a glance: when prophylaxis started, how products changed over the years, whether bleeding patterns shifted after a regimen change, and where gaps exist in scheduled assessments. For clinicians reviewing a patient before a clinic visit, the timeline surfaces what has been recorded and what is missing without navigating through multiple CBDR modules.

Clinical Applications

  • Reviewing treatment history prior to clinic appointments or multidisciplinary team discussions
  • Identifying gaps in outcome assessments (HJHS, PROBE, EQ-5D) or laboratory monitoring
  • Verifying that treatment plan records match actual product usage patterns over time
  • Tracking structured monitoring schedules for patients on novel therapies such as gene therapy or rebalancing agents (see Sections 10 and 11)
  • Supporting data quality reviews by making missing or inconsistent records visible in context

Access and Export

The timeline is accessible from any patient row in the Patient List. It supports PNG export for use in clinical documentation, quality improvement reporting, or case review presentations.