At Global Patients we are working with Acaster Lloyd Consulting, a scientific research company, to recruit individuals with paroxysmal nocturnal hemoglobinuria (PNH) in the UK to take part in an interview study to understand the impact on PNH on quality of life, as well as to obtain some feedback on a survey to evaluate preferences for treatments for PNH.
The study is sponsored by Alexion AstraZeneca Rare Disease.
The interview will last 60-minutes. You will be asked some questions about your experiences with PNH, as well as your thoughts on a survey we have developed for individuals with PNH. The study does not involve treatments; we are only interested in opinions.
The results from this study will help researchers better understand the experiences of individuals with PNH and their preferences for different treatment characteristics. The findings may be published at scientific conferences or in peer-reviewed journals (any information that is presented or published would be anonymous so it would not be possible to identify you).
You will be required to show proof of your PNH diagnosis in order to take part (e.g. physician letter or prescription). As compensation for your time, you will receive an incentive of £105 if you complete the 60-minute interview. This includes £60 for the interview and £45 for providing proof of diagnosis (estimated to take up to 45 minutes).
If you would like more information about this study or are interested in taking part, do not hesitate to contact me at email@example.com