HPES SYMPTOM

How frequently a patient experiences symptoms due to their hypoparathyroidism within two categories (also called domains)

1. PHYSICAL (e.g. muscle cramps, tingling, pain, fatigue, heart problems)

2. COGNITIVE (e.g. memory, concentration, thinking clearly)

HPES IMPACT

How much hypoparathyroidism interferes with a patient’s life across four categories (also called domains)

1. PHYSICAL FUNCTIONING (e.g. moving, walking, exercising)

2. DAILY LIFE (e.g. cleaning, cooking, hobbies, planning)

3. PSYCHOLOGICAL WELL-BEING (e.g. anxiety, frustration, isolation)

4. SOCIAL LIFE & RELATIONSHIPS (social activities, relationships w/ friends and family)

NOTE: Scores require ≥50% item completion per domain; total scores require all domains completed.

• Track changes over time – clinically meaningful changes are

  • 15-17 points for Symptom scales (both domains)

  • 13-18 points for Impact scales (except for the Physical Functioning domain where the range is 17-19 points)

• Review both scales together – high symptom frequency may not always correlate with high life impact.

• Examine patterns in domains (sub-categories) – identify which areas most affected

NOTE: Patients may still feel better even if numerical improvement is <13 points - always engage in proper dialogue with the patient to understand their condition.

Data usage details (not accessible to Ascendis Pharma)

• Physician login data: name, email, practice name and country are used for you to log in to the Platform and to send you system generated notifications relating to the Platform (e.g. when a patient has submitted a questionnaire)

• Patient identification data: first and last name is used for you (as a physician) to identify the patient

• Contact data: patient email and/or phone number (if provided) is used solely for sending system generated messages (e.g. link to questionnaire)

Ascendis Pharma will only be able to access:

• Aggregated Platform usage data (e.g. number of physicians signed up, number of patients signed up, number of surveys completed)

• Aggregated survey results data at the country level (HPES scores, domain scores) ONLY when at least 5 patients’ data are included

Ascendis Pharma will not access:

• Any individual-level data (e.g. physician or patient names, emails, questionnaire data)

To learn more about how your personal data is processed, please refer to the Privacy Notice.

HPES SYMPTOM

How frequently a patient experiences symptoms due to their hypoparathyroidism within two categories (also called domains)

1. PHYSICAL (e.g. muscle cramps, tingling, pain, fatigue, heart problems)

2. COGNITIVE (e.g. memory, concentration, thinking clearly)

HPES IMPACT

How much hypoparathyroidism interferes with a patient’s life across four categories (also called domains)

1. PHYSICAL FUNCTIONING (e.g. moving, walking, exercising)

2. DAILY LIFE (e.g. cleaning, cooking, hobbies, planning)

3. PSYCHOLOGICAL WELL-BEING (e.g. anxiety, frustration, isolation)

4. SOCIAL LIFE & RELATIONSHIPS (social activities, relationships w/ friends and family)

NOTE: Scores require ≥50% item completion per domain; total scores require all domains completed.

• Track changes over time – clinically meaningful changes are

  • 15-17 points for Symptom scales (both domains)

  • 13-18 points for Impact scales (except for the Physical Functioning domain where the range is 17-19 points)

• Review both scales together – high symptom frequency may not always correlate with high life impact.

• Examine patterns in domains (sub-categories) – identify which areas most affected

NOTE: Patients may still feel better even if numerical improvement is <13 points - always engage in proper dialogue with the patient to understand their condition.