Acute porphyria study: burden of illness

The BPA, along with Alnylam Pharmaceuticals and BresMed (an independent health economic and outcome research consultancy), is conducting an online survey on how Acute Porphyria impacts the lives of affected individuals and their carers.

The research will involve completing an online survey which will take approximately 25 minutes. The questions aim to better understand the acute and chronic symptoms experienced, disease management, and impact on work, social life and overall quality of life.

Any adult with an acute porphyria or their main caregiver may complete the survey. There is no limit to the number of people who can take part in the research.

The anonymised results of the survey may help explain the burden of acute porphyria to health authorities and the public. Such studies can help in the development of bringing new drugs to market or may help in getting them through the regulatory frameworks such as the European Medicines Agency and NICE (National Institute for Care Excellence).

Eligible participants of the survey will be asked whether they would like to take part in an interview at a later date, to gain further in-depth information about how acute porphyria can impact life for patients and their families.

You can review the patient information (survey) (interview) and the consent forms (survey) (interview) before deciding whether you would like to take part.

The survey is NOW OPEN and is expected to close on 31st January 2019.

For patients:

For carers: