The Autoimmune Registry
Paroxysmal nocturnal hemoglobinuria Insufficent data to report on this disease.
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  • Names
    • Paroxysmal nocturnal hemoglobinuria

    Category: Blood
    Prevalence From 399 to 433 cases in the US (Jalbert 2019). Female/Male ratio: Unknown.
    Age of Onset Onset typically occurs between ages 40 and 50.
    Description Paroxysmal nocturnal hemoglobinuria is a rare blood disorder caused when a protein is missing from a person's blood due to a mutation in a gene. Without the protein, the body's immune system attacks the red blood cells and breaks them apart.

    Not confirmed as an autoimmune or autoinflammatory disease.
    ICD-10 Code: D59.5     SNOMED Code: 1963002
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      Symptoms
      Resources Link to Clinical Trials
      Link to PubMed
      References Link to Mayo Clinic
      Link to Cleveland Clinic
      Link to Healthline
      Profile by: Autoimmune Registry
    • Profile updated September 2024
    • Charts generated Oct 12, 2024 at 12:54 PM ET
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      Paroxysmal nocturnal hemoglobinuria sex breakdown


      Paroxysmal nocturnal hemoglobinuria age breakdown

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      Insufficent data to report on this disease.

    • Paroxysmal nocturnal hemoglobinuria top comorbidities/symptoms
      Chart is omitted due to low report count.


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      * Disease is suspected as autoimmune, but unconfirmed.
      Data Source: Graphs on this page represent data from the Autoimmune Registry Inc. here. To protect participant anonymity, results derived from fewer than 5 participants are not graphed. The Autoimmune Registry Inc is a 501(c)(3) non-profit supported by donors like you.

    • Anti-inflammatory / specialty medications and supplements


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      * Biologic medications.
      Data Source: Graphs on this page represent data in electronic health records from the All of Us research database. As of July 2024, there are 451,000 sets of electronic health records collected from participants. A snapshot of the data can be found here. To protect participant anonymity, results derived from fewer than 20 participants are not graphed.
      The All of Us Research Program is supported by the National Institutes of Health, Office of the Director: Regional Medical Centers: 1 OT2 OD026549; 1 OT2 OD026554; 1 OT2 OD026557; 1 OT2 OD026556; 1 OT2 OD026550; 1 OT2 OD 026552; 1 OT2 OD026553; 1 OT2 OD026548; 1 OT2 OD026551; 1 OT2 OD026555; IAA #: AOD 16037; Federally Qualified Health Centers: HHSN 263201600085U; Data and Research Center: 5 U2C OD023196; Biobank: 1 U24 OD023121; The Participant Center: U24 OD023176; Participant Technology Systems Center: 1 U24 OD023163; Communications and Engagement: 3 OT2 OD023205; 3 OT2 OD023206; and Community Partners: 1 OT2 OD025277; 3 OT2 OD025315; 1 OT2 OD025337; 1 OT2 OD025276. In addition, the All of Us Research Program would not be possible without the partnership of its participants.

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      Patient-reported 7-day average pain
      Chart is omitted due to low report count.


      Patient-reported 7-day average fatigue
      Chart is omitted due to low report count.


      General physical health
      Chart is omitted due to low report count.


      General mental health
      Chart is omitted due to low report count.


      Social and relationship satisfaction
      Chart is omitted due to low report count.


      General quality of life
      Chart is omitted due to low report count.


      Ability to carry out social roles and activities
      Chart is omitted due to low report count.


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      Data Source: Graphs on this page represent data in self-reported survey results from the All of Us research database. As of July 2024, there are 560,000 participants who have completed these surveys. This dataset, however, may not be representative of the US population. A snapshot of the data can be found here. To protect participant anonymity, results derived from fewer than 20 participants are not graphed.
      The All of Us Research Program is supported by the National Institutes of Health, Office of the Director: Regional Medical Centers: 1 OT2 OD026549; 1 OT2 OD026554; 1 OT2 OD026557; 1 OT2 OD026556; 1 OT2 OD026550; 1 OT2 OD 026552; 1 OT2 OD026553; 1 OT2 OD026548; 1 OT2 OD026551; 1 OT2 OD026555; IAA #: AOD 16037; Federally Qualified Health Centers: HHSN 263201600085U; Data and Research Center: 5 U2C OD023196; Biobank: 1 U24 OD023121; The Participant Center: U24 OD023176; Participant Technology Systems Center: 1 U24 OD023163; Communications and Engagement: 3 OT2 OD023205; 3 OT2 OD023206; and Community Partners: 1 OT2 OD025277; 3 OT2 OD025315; 1 OT2 OD025337; 1 OT2 OD025276. In addition, the All of Us Research Program would not be possible without the partnership of its participants.

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      Concerns about ability to pay
      Chart is omitted due to low report count.


      Patient employment status
      Chart is omitted due to low report count.


      Patient insurance coverage
      Chart is omitted due to low report count.


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      Insufficent data to report on this disease.