HSP Natural History Study Visits

Research Study: Registry & Natural History Study for Early-Onset Hereditary Spastic Paraplegia

Baseline & Follow-Up Assessment Schedule of Events

Baseline Assessment: This initial assessment helps establish a comprehensive understanding of your medical history, symptoms, and functional abilities.

Yearly Follow-Up Assessment: This annual assessment evaluates any changes in your medical history, symptoms, and functional abilities over the past year. It helps track disease progression, treatment effectiveness, and overall health status to ensure personalized and proactive care.

Welcome & Introduction (15 minutes)

  • Introductions: Study team, family, and interpreter (if needed) 
  • Meet with the study coordinator
  • Review the Informed Consent Form (For Baseline Assessments) 
  • Overview of the virtual visit & study participation

Standardized Clinical Questionnaires (45 minutes)

  • Medical & Family History
    • Review of past and current medical conditions
    • Discussion of family history related to HSP
  • Symptom & Function Assessment
    • Discussion of mobility, spasticity, and other neurological symptoms
    • Functional impact on daily activities

Virtual Physical Examination (15 minutes)

  • Guided motor function and mobility assessment
  • Evaluation of muscle tone and spasticity through visual and movement-based tasks

Please ensure you have a stable internet connection, a properly functioning Zoom setup, and adequate lighting for the physical examination. You may be asked to adjust your camera to provide a clear view of your movements such as walking, lower and upper limb mobility. 

Research Updates, Wrap-Up & Next Steps (10 minutes)

  • Research-specific updates from provider 
  • Time for questions
  • Review of follow-up items 

Total Estimated Time: 1 hour 30 minutes

Step-by-Step Guide for Families: Preparing for a Virtual Physical Exam

We are looking forward to meeting about our research study! Proper preparation ensures that your clinician can accurately assess your child’s movements and responses. Follow this guide to set up your space, technology, and camera angles before the appointment.

     1. Gather Necessary Equipment

  • A laptop, tablet, or smartphone with Zoom installed
  • A stable surface (tripod, table, or stack of books)
  • Good lighting (natural light or a lamp facing the child)
  • A quiet, open space for walking tests

     2. Set Up Zoom for the Exam

  • Log into Zoom and make sure the camera is enabled.
  • Adjust video settings: Click on the video icon in Zoom, go to “Video Settings,” and ensure a clear resolution with proper lighting.
  • Check internet connection: Use a stable Wi-Fi or wired connection.

     3. Position the Camera for Each Exam Section

     Upper Extremity (UE) Tone Exam

  • Adjust the camera to show the child’s shoulders, arms, and hands.
  • Ensure the child is seated comfortably and has space to move their arms.

       

     Lower Extremity (LE) Tone Exam

  • Tilt the camera downward to capture the child’s thighs, knees, and feet.
  • Ensure a stable camera position to avoid shaky footage.

       

     Walking Exam (3-10 Meters) (if applicable)

  • Place the camera at least 3 meters (10 feet) away.
  • The child should walk naturally (with or without walking aids) toward and away from the camera.

       

     Stairs (if applicable)

  • Position the camera at the bottom of the staircase pointed upwards to capture clear foot placement on each step.
  • Ensure proper lighting to avoid shadows.

     4. Common Mistakes & Fixes

  • Poor lighting? Move to a well-lit area or add a lamp.
  • Unstable camera? Use a tripod or secure the device on a firm surface.
  • Camera too close or too far? Adjust the distance so the child’s body is clearly visible.
  • Internet lag? Ensure a strong Wi-Fi connection or switch to a wired connection if possible.

     5. Final Check Before the Exam

  • Ensure all devices are charged or plugged in.
  • Make sure Zoom is updated and working properly.
  • Check the camera positioning one last time to confirm visibility.

     6. What to Expect During the Exam

  • The healthcare provider will guide you through the movements.
  • You may need to adjust the camera during the session.
  • The child should wear comfortable clothing for easy movement.

     7. Contact Information for Assistance

  • If you experience technical difficulties, contact our team @hsp.research@childrens.harvard.edu for support.
  • By following these steps, you will ensure a smooth and effective virtual physical exam. Thank you for your cooperation!