Evaluation of the Quality of Life and Treatment Experiences of Patients with Paroxysmal Nocturnal Hemoglobinuria | Aplastic Anemia and MDS International Foundation (AAMDSIF) Return to top.

Evaluation of the Quality of Life and Treatment Experiences of Patients with Paroxysmal Nocturnal Hemoglobinuria

The purpose of the study is to learn what it is like to have PNH and being treated with for PNH. Individuals who participate in the study will complete an online survey about what it is like to live with PNH. The survey will take about 45 minutes. Participants may also be asked to take part in a one-hour interview by telephone or computer. The interviewer will ask questions about what it is like to have, and be treated for, PNH. No medical treatment of any kind will be given as part of this study.

Hello!

My name is Veronica Carrera and I work at Global Perspectives, where we look for people to take part in scientific studies.

We are helping to conduct a study to better understand what it is like to have paroxysmal nocturnal hemoglobinuria (PNH). We are looking for adults (age 18 or older) who live in the US and are currently being treated for PNH.

Study participants will complete an online survey, answering questions about their experience of PNH. The online survey takes about 45 minutes to complete. Some participants who complete the survey will also be asked to take part in a one-on-one interview (by phone or computer). Compensation will be available for all participants who complete the survey; additional compensation will be available to all participants who also complete an interview. No treatment will be given as part of the study.

If you or someone you know meets these criteria and would like to participate, please contact me at veronica@global-patients.com or (276) 622-6595 for more information.

I look forward to hearing from you!