07 Nov '17, 2pm

Joint study by AAMDSIF/NORD on PNH

Paroxysmal Nocturnal Hemoglobinuria has an adverse impact on patients’morbidity and mortality, however, little research has been performed to understand their experiences from onset of symptoms to diagnosis. The purpose of this study was to elucidate the patients’ path to diagnosis and impact on certain aspects of quality of life surrounding the diagnosis of PNH.A 32-question survey related to the path to diagnosis was distributed to patients identified as having PNH from the Aplastic Anemia and MDS International Foundation and the National Organization for Rare Disorders databases.Patients reported a wide range of symptoms with multiple healthcare providers encountered prior to diagnosis.Although the average length of time to diagnosis was less than 2 years, the course remained emotionally taxing. Raising awareness of symptoms of PNH and approach to diagnosis is important...

Full article: http://www.aamds.org/article/joint-study-aamdsifnord-pnh