Paroxysmal Nocturnal Hemoglobinuria Quiz

How the Scales are Structured
Who Usually Takes This Test?
See How You Compare
Below is a preview of how scores are typically distributed across each scale.
Example Questions From the Test
- My tested results have not shown hemolysis.
- One result was borderline or temporarily abnormal, without a continuing pattern.
- Repeated results have suggested hemolysis, such as abnormal LDH, bilirubin, haptoglobin, or reticulocytes.
- A clinician identified active intravascular hemolysis requiring prompt investigation, monitoring, or treatment.
- I have not been diagnosed with or evaluated for a bone-marrow failure disorder.
- A clinician considered a marrow problem, but no such disorder was diagnosed.
- I have a diagnosed marrow condition other than aplastic anemia, such as a myelodysplastic disorder.
- I have been diagnosed with aplastic anemia or another significant bone-marrow failure syndrome.
- None of these chest or breathing experiences.
- Brief mild discomfort or breathlessness that settled promptly and has not returned.
- Recurring breathlessness or sharp chest discomfort, particularly when taking a breath.
- Sudden chest pain, severe breathing difficulty, coughing blood, blue lips, or fainting.
Paroxysmal Nocturnal Hemoglobinuria Quiz - Description and methodology of the test
People considering evaluation for unexplained anemia, dark urine, unusual fatigue, clot-related symptoms, or a possible PNH history may find the paroxysmal nocturnal hemoglobinuria quiz useful when deciding what to discuss with a clinician. This online self-report questionnaire organizes reported experiences, known findings, and testing context; it is not a PNH test that interprets laboratory values or establishes a diagnosis. That structure supports a more focused decision about what to do next.
What This Assessment Explores
The questions connect PNH-related medical context with dark urine, jaundice, fatigue, breathlessness, low counts, clot history, marrow disorders, and flow-cytometry testing.
The result presents three result summaries; this questionnaire helps organize reported experiences and known findings before a paroxysmal nocturnal hemoglobinuria test or clinical conversation:
- Blood Count and PNH Testing Context (0-15) summarizes blood-count, marrow, and flow-cytometry context; bands are No known indicators (0), Context to review (1-2), and Prompt follow-up warranted (3-15).
- Clot and Emergency Warning Signs (0-15) reflects clot history and urgent chest, breathing, abdominal, limb, or neurological patterns; bands are No indicators endorsed (0), Medical review appropriate (1-2), and Prompt action warranted (3-15).
- Hemolysis and Anemia-Related Changes (0-15) reflects dark urine, yellowing, weakness, breathlessness, low counts, and anemia treatment; bands are No indicators endorsed (0), Worth discussing (1-2), and Prompt action warranted (3-15).
Methodology and Scientific Basis
Each question offers four ordered choices, moving from no known concern or a mild, isolated experience toward repeated findings, confirmed history, severe impairment, or an emergency pattern. The structure summarizes the respondent’s described concern without assigning laboratory values or inferring a diagnosis.
In its online self-report format, the PNH quiz uses displayed summaries that are unvalidated reflective and safety measures, not standardized clinical scales. The result instructions state that a single red-flag 3-point response overrides the total, so a reassuring aggregate should not outweigh that response.
The Richards et al. (2020) study provides the closest clinical context, describing a patient cohort whose GPI-deficient cells were detected by flow cytometry. Parker et al. (2005) supports discussion of hemolysis, thrombosis, marrow failure, and diagnostic management, while Borowitz et al. (2010) provides flow-cytometry guidance for diagnosis and monitoring. The questionnaire is conceptually consistent with these sources, not an adaptation or validated reproduction of their instruments.
Interpretation should consider timing, confirmed results, and current health context. Recall, self-awareness, and response style can affect self-report, while bands organize follow-up attention rather than clinical severity.
- Richards SJ, Dickinson AJ, Cullen MJ, Griffin M, Munir T, McKinley C, Mitchell LD, Newton DJ, Arnold L, Hill A, Hillmen P. Presentation clinical, haematological and immunophenotypic features of 1081 patients with GPI-deficient (paroxysmal nocturnal haemoglobinuria) cells detected by flow cytometry. British Journal of Haematology. 2020;189(5):954-966. 10.1111/bjh.16427
- Parker C, Omine M, Richards S, Nishimura JI, Bessler M, Ware R, Hillmen P, Luzzatto L, Young N, Kinoshita T, Rosse W, Socie G, International PNH Interest Group. Diagnosis and management of paroxysmal nocturnal hemoglobinuria. Blood. 2005;106(12):3699-3709. 10.1182/blood-2005-04-1717
- Borowitz MJ, Craig FE, DiGiuseppe JA, Illingworth AJ, Rosse W, Sutherland DR, Wittwer CT, Richards SJ, Clinical Cytometry Society. Guidelines for the diagnosis and monitoring of paroxysmal nocturnal hemoglobinuria and related disorders by flow cytometry. Cytometry Part B: Clinical Cytometry. 2010;78(4):211-230. 10.1002/cyto.b.20525