Paroxysmal Nocturnal Hemoglobinuria in the US

At Global Patients, an IQVIA business, we are looking to talk to adults with PNH to take part in an online survey study.

What is this study about?

The purpose of this study is to understand patients’ preferences for different characteristics associated with treatments for PNH. 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.

The study is sponsored by Alexion AstraZeneca Rare Disease.

What is involved?

You will be required to show proof of your PNH diagnosis in order to take part (e.g. physician letter or prescription).If you qualify for this study, you will be asked complete a 30-minute online survey. Your participation is completely confidential and subject to UK privacy laws. You can stop the survey at any time. If you complete the survey and provide confirmation of diagnosis you will receive $150 for your time. This include $60 US for completing the survey and $90 for providing confirmation of diagnosis (estimated to take up to 45 minutes).

Who can participate?

Adults with PNH who are currently living in the US and a sufficient level of English. You will be asked to provide proof of your PNH diagnosis in order to participate.

How to participate:

If you are in interested in taking part in this study, please use the contact information below.

  • You will be asked some questions that will help determine if you are eligible.
  • You will be notified of whether or not you are selected to participate.
  • If you are eligible, we will send you a link to the online survey.

For more information, please contact: miriam@global-patients.com




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