Alnylam - AHP - Acute Hepatic Porphyria

The Porphyria Burden Assessment (PBA) is a questionnaire that collects information on the chronic symptoms of Acute Hepatic Porphyria (AHP). The questionnaire takes only a few minutes to complete.

The Porphyria Burden Assessment is intended to be used by patients who have been diagnosed with AHP.

I understand and consent to the collection, use and disclosure of my personal data by Jebbit necessary for participating in this assessment. The personal data collected, used, and disclosed is only related to the severity and impact of symptoms, whereas there is no direct or indirect identifiable information about participants. Jebbit collects and processes your responses, which can be disclosed to the sponsor of the assessment, Alnylam Pharmaceuticals, only in aggregated and anonymized form.

For more information about the processing of your personal data by Jebbit, please refer to the privacy policy: https://www.blueconic.com/privacy-policy

© 2026 Alnylam Pharmaceuticals, Inc. All rights reserved. Alnylam Pharmaceuticals is responsible for the funding and content of this assessment.
05/2026 - AS1-INTX-00155

Non-promotional material. Please contact your physician for any treatment advice.

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1.

Over the past 7 days, how severe was your fatigue due to AHP at its worst?

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2.

Over the past week (7 days), how severe was your muscle weakness due to AHP at its worst?

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3.

Over the past week (7 days), how severe was your abdominal pain due to AHP at its worst?

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4.

Over the past week (7 days), how severe was your nausea due to AHP at its worst?

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5.

Over the past week (7 days), how many times did you vomit (throw up) due to AHP?

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6.

Over the past week (7 days), how severe was your bodily pain due to AHP at its worst?

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7.

Over the past week (7 days), how severe was your brain fog (for example, difficulty concentrating or difficulty remembering things) due to AHP at its worst?

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8.

Over the past week (7 days), how severe were your skin symptoms (for example, blisters, scarring, fragile skin, or sun sensitivity) due to AHP at their worst?

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9.

Over the past week (7 days), how much of the time did AHP symptoms negatively affect your emotional state or mood (for example, causing you to feel anxious, sad, frustrated, or stressed)?

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10.

Over the past week (7 days), how much of the time did AHP symptoms negatively impact your ability to do physical activities (for example, difficulty walking or exercising)?

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11.

Do you currently work or go to school?

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12.

Over the past week (7 days), how much of the time did AHP symptoms negatively impact your ability to work or go to school (for example, missing work or school, or working fewer hours)?

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13.

Over the past week (7 days), how much of the time did AHP symptoms negatively impact your sleep?

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14.

Over the past week (7 days), how burdensome was it for you to adjust your daily activities to manage your AHP symptoms or prevent attacks?

YOUR PORPHYRIA BURDEN SCORE

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Based on your responses to the questions.

Your score reflects how much your AHP symptoms have been affecting you over the past week.
A higher score means your symptoms are having a big impact on your daily life. This isn’t a diagnosis. It’s a snapshot that helps your doctor understand how you’ve been feeling between visits.

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