On behalf of The British Porphyria Association, Alnylam Pharmaceuticals and BresMed Health Solutions Limited*, thank you for participating in this online survey. Through this survey we want to gain insight into the experiences of living with acute porphyria (Acute Intermittent Porphyria, Variegate Porphyria, Hereditary Coproporphyria, and delta-Aminolevulinic Acid Dehydratase Porphyria) from the perspective of caregivers.
The questions will mainly focus on your experiences in caring for someone with acute porphyria and the impact on different areas of your life such as work, social life and overall quality of life. A couple of questions will focus on the disease diagnosis, symptoms, and disease management.
This survey should take between 25 and 30 minutes to complete. Your individual responses will be analysed and summarised by BresMed. The anonymised results will potentially help communicate the full burden of illness to health authorities and the public in the form of a publication and report to the National Institute for Health and Care Excellence (NICE). However, your individual personal information will remain anonymous.
* BresMed is an independent, global consultancy in health economics and outcomes research. BresMed has been commissioned by Alnylam Pharmaceuticals to conduct this survey to gain a better understanding on caregivers’ experiences in caring for a patient with acute porphyria.
Safeguarding and Adverse events reporting
Although what you mention during the survey will be treated in confidence, should you mention a side effect when you or someone you know took a medicine developed by Alnylam Pharmaceuticals, we will need to follow appropriate reporting procedures. Everything else you mention in this survey will continue to remain confidential.
If as a result of this survey it is evident a vulnerable individual is suffering or is likely to suffer significant harm, and a referral must be made to the appropriate authority without delay in order that the individual can be protected the interviewer must ensure that any disclosure of a confidential nature, which may be potentially harmful to the individual, must be dealt with in a sensitive and responsible manner.
Please ensure you have read the following documents, which can be found on the BPA website:
- Participant Information Sheet - Survey
- Participant consent - Survey
By clicking the yes button below, you declare:
- You have read and understood the information for the above research and have been provided with the details of whom to contact if you have questions about the research.
- You understand that the research is being conducted on behalf of a pharmaceutical company.
- You understand that your answers will be reviewed and summarized by BresMed Health Solutions Ltd., but your personal identifiable information will not be shared with the sponsor or other third parties as outlined above.
- You understand that your participation is voluntary and that you are free to withdraw from the research and your consent at any time, without giving any reason.
- You consent to the collection and use of your personal data as described in the above.
- You consent to the use of the results derived from this research as described above.
- You agree to take part in the above research.