SMA SMA Care Registry Patient Information Center
Authorized medical staff
إعلانات عامة للمرضى وعائلاتهم

تبليغات المرضى

آخر التحديثات والتعليمات العامة المنشورة من الفريق الطبي في سجل رعاية مرضى ضمور العضلات الشوكي.

خصوصيتكم مهمة هذه الصفحة مخصصة للتبليغات العامة ولا تعرض بيانات المرضى الشخصية.

أحدث التبليغات

تظهر التبليغات المهمة أولاً.

Sign in to Doctor Portal

SMA SMA Care Registry

Today Needs Attention

Quick Actions

Registry Snapshot

Recent Visits

Optional Overview Charts

SMA Type Distribution

Latest Clinical Status

Support Needs

Visit Workflow

New Visit

Existing patient clinical visit

Patient not selected

Patient Information

Basic Information
Diagnosis
Status & Attachments
Images are saved with the patient information

Visit Data

Clinical visit record

Visit Summary

Essential visit information

Core visit fields
Physical Therapy AssessmentMobility, functional scores, and physiotherapy notesOptional
Musculoskeletal / Skeletal StatusScoliosis, contractures, and skeletal findingsOptional
Treatment & Clinical EventsMedication, manufacturer, dose, and important eventsOptional
Neurology AssessmentNeurologist review, clinical examination, and treatment planNot recorded
Clinical FindingsStructured neurological, bulbar, and respiratory examination Not recorded
Functional & Motor Status Current function observed during this visit
Neurological Examination Record only findings assessed during this visit
Bulbar & Respiratory Findings Swallowing, airway clearance, and breathing pattern
Visit ImagesAttach clinical images only when requiredOptional
Patients
History
Patient Profile
Pending Neurology Review
Registry Accountability

Activity Log

Admin-only history of important registry changes, reports, and exports.

0 loaded Filters apply to the activity loaded on this page.
Registry Reporting

Reports

Build a clear registry report, review the matched records, then export or print it.

Build Report Choose the report, narrow the records only when needed, then generate the final table.
1 Choose Report
2 Select Cohort
More Report Criteria SMN2, clinical events, skeletal findings, and visit dates
Registry Data ToolsAdministrative import, bulk image, and storage maintenance tools

Import from Google Sheet

Bulk Patient Images

Nothing will be uploaded until the preview appears and you press Confirm Upload.

Clear All Patient Images

Admin only. This permanently deletes all patient image files from Firebase Storage and removes image links from patient and visit records.

Clinical Registry Analysis

Research

Select a patient cohort and review the outcomes and clinical events observed in the registry.

Observed registry data only. Results describe the selected cohort and do not establish treatment effect or causation.
Select Patient Cohort
Start with the criteria used most often in clinical and ministry review.
More Clinical Criteria
Open only when a more specific research cohort is required.
Dashboard Details
Staff Support

Help & User Guide

Choose the task you need. Each guide shows only the essential steps for safe daily use.

Doctor guide
01

Quick Start

The four steps used most often during daily clinical work.

  1. Find the patient Open Patients and search using the patient ID or name.
  2. Start the visit Select New Visit, confirm the patient, and check the visit date.
  3. Record what is available Complete the essential section first and open detailed sections only when needed.
  4. Review the record Open Patient Profile to confirm the timeline, scores, treatment, events, and images.
02

Task Guides

Open only the workflow you are using now.

Access, privacy, and safe use Signing in and protecting patient information
  1. Sign in through Doctor Portal using your assigned account.
  2. Never share your account, password, or an open registry session.
  3. Confirm the correct patient ID before viewing or recording clinical information.
  4. Do not place patient names, file numbers, images, or personal information in public notices.
  5. Use Logout when you finish, especially on a shared computer or mobile device.
Find and review a patient Patients list, profile, timeline, and printable file
  1. Open Patients from the main navigation.
  2. Search by patient ID or name and use filters only when the list needs narrowing.
  3. Select Profile to review fixed patient details, the latest clinical summary, images, and the visit timeline.
  4. Open a timeline visit when detailed clinical information is required.
  5. Use Print Patient File when an A4 clinical copy or PDF is required.
Add or update a patient Patient identity and fixed registry information
  1. Open Patients and select Add Patient.
  2. Enter the unique patient ID, name, date of birth, SMA type, SMN2 copies, status, and treatment access status.
  3. Check for an existing patient before saving to avoid duplicate records.
  4. Use Edit Patient only for fixed patient information. Treatment and clinical changes belong in visits.
  5. Review the saved Patient Profile before starting the first visit.
Record a new visit Fast documentation with optional clinical detail
  1. Select New Visit and choose the correct patient.
  2. Confirm the visit date. The system selects today's date automatically, but it can be changed.
  3. Complete the essential visit and functional assessment information available today.
  4. Open Clinical Findings, Treatment & Clinical Events, Musculoskeletal Status, or Visit Images only when relevant.
  5. Review the selected patient and entered values, then select Save Visit once.

The review status is automatic. Physiotherapy information without a completed neurology review is sent to Pending Neurology Review.

Complete a neurology review Pending review workflow for the neurologist
  1. Open Pending Neurology Review from the main navigation.
  2. Choose the pending visit and review the physiotherapy summary shown at the top.
  3. Complete the neurology findings and any required clinical sections.
  4. Save the visit. The system marks it Complete automatically when the neurology section is completed.
  5. Open the Patient Profile to confirm that the completed visit appears in the timeline.
Use Reports and Research correctly Official output versus observational analysis

Reports

Use Reports to build filtered patient, visit, treatment, outcome, or clinical-event lists for printing and authorized export.

Research

Use Research to define a clinical cohort and review observed outcomes. Results describe recorded observations and do not prove treatment effect or causation.

Exported files may contain confidential information. Store and share them only through approved channels.

Export actions may be unavailable for viewer accounts.

Publish a patient notice General information visible before sign-in
  1. Open Patient Notices and enter a short, clear title.
  2. Choose the appropriate category and use Important only when the notice requires priority.
  3. Write general information only. Never include identifiable patient information.
  4. Review clinical and medication instructions with the responsible medical team before publishing.
  5. Long guidance should be divided into short notices so it remains readable on mobile devices.
Install the registry Application-style access on a supported device
  1. Select Install SMA Registry when the option appears in the navigation.
  2. Confirm the installation in the browser prompt.
  3. Open the installed registry from the device home screen or applications list.
  4. Clinical data still requires an authorized account and an internet connection.
Administrator tools Activity Log and restricted actions
  1. Use Activity Log to review important additions, updates, deletions, notices, reports, and exports.
  2. Use destructive actions only after confirming the patient or visit record.
  3. Review user roles in Firestore when a staff member cannot perform an expected action.
  4. Do not change Firebase rules or configuration during routine registry use.
Still unsure? Stop before saving and confirm the workflow with the registry administrator.
Public Communication

Patient Notices

Publish general information only. Never include patient names, file numbers, images, or other identifiable information.

Published Notices

Patient image

Capture Patient Profile Photos