EPP and XLP quality of life study

The BPA have been asked to help find patients and family members of patients with EPP or XLP to take part in a study about how EPP/XLP (erythropoietic protoporphyria and X-linked rythropoietic protoporphyria) impacts on quality of life.

What is the study aiming to do?

This study aims to gather information relating to day-to-day life, such as lifestyle choices, study/work choices, caring responsibilities, physical, social, psychological and financial impacts, as well as how a diagnosis was made, and the role of different doctors involved in the care of you or your loved one.

Partners and members of the family offer a wider perspective of how significantly all lives are impacted as a result of EPP, so parents of children with EPP/XLP and partners/loved ones of adults with EPP/XLP will also be included.

Why is this important?

The anonymised results of the survey may help explain the burden of EPP/XLP 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).The outcomes of research are critically important to getting medications through the UK reimbursement process (to become available on the NHS in the UK), as they take the information about these impacts into consideration when assessing the need for a medication.

How do I learn more?

Please see the detailed information and the information in the image below. Or to learn more before you make contact with the study organisers, please feel free to contact Liz via liz.gill@porphyria.org.uk or via the helpline 0300 30 200 30.

How do I get involved?

Please contact the study organisers directly: 0207 487 9181 or panan.skopovi@schlesingergroup.com

Project Number: LON21P0295

The survey is NOW OPEN and is expected to close in July 2021.