Hi Everyone,

I am conducting a study on fatigue and quality of life in patients
with PNH. I am a graduate student at Penn State University and this
my PhD project. I am also a PNH patient. Below I am posting a
recruitment ad for the study as well as my contact information. The
study involves no travel and will be of no cost to you. Please get
in touch with me if you are interested or have any questions. As
you know, there are so few of us that getting participants for
studies can be difficult. I hope some of you can help!!

Sara
Department of Psychology, Penn State University

VOLUNTEERS NEEDED FOR RESEARCH ON QUALITY OF LIFE IN PATIENTS WITH
PAROXYSMAL NOCTURNAL HEMOGLOBINURIA

Researchers at Penn State University are looking for volunteers to
help them investigate quality of life in patients with paroxysmal
nocturnal hemoglobinuria (PNH). The study will focus on both
physical symptoms and emotional aspects of the disease. You will be
asked to fill out several questionnaires as well as have blood drawn
once. The blood draw will be done during a routine doctor's visit.
Participants must be at least 18 years of age, and previous
diagnosis of PNH by flow cytometry is required. If you currently
have any other bone marrow disorder, thyroid disease, are pregnant,
are trying to become pregnant or are taking fertility drugs or
eculizumab, you are not eligible to take part in this study. If you
had aplastic anemia in the past but currently do not, you are still
eligible to take part in this study.
If you are interested please contact:
Sara Higgins
814-865-6218
or
sch167@...