The Autoimmune Registry

Primary sclerosing cholangitis

Graphs for this disease are generated based on data from the All of Us database.
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Disease Profile Top Comorbidities Top Medications Patient Health Socioeconomic Factors

Names	Primary sclerosing cholangitis Chronic obliterative cholangitis Fibrosing cholangitis Stenosing cholangitis Abbreviations: PSC Category: Liver
Prevalence	From 16,065 to 24,497 cases in the US (Liang 2017). Female/Male ratio: 0.8x.
Age of Onset	Onset typically occurs between ages 30 and 40.
Description	PSC is a rare progressive disorder of the liver which is characterized by inflammation, thickening, and abnormal formation of fibrous tissue within the passages that carry bile from the liver (bile ducts). Both bile ducts within the liver and outside the liver are affected. Evidence of autoimmunity: T cells ICD-10 Code: K83.01 SNOMED Code: 197441003
Patient Groups	American Liver Foundation (Non-profit) PSC Partners (Non-profit) PSC Partners Seeking a Cure Canada (Non-profit)
Bloggers	PSC Partners Blog
Symptoms	PainNauseaFatigueFeverItchy skinChillsAbdominal discomfortNight sweatsAbdominal painWeight lossMalaiseDark urine
Resources	Link to Clinical Trials Link to PubMed
References	Link to Mayo Clinic Link to Cleveland Clinic Link to Healthline
	Profile by: Laavanya Pasupuleti Profile updated September 2024 Charts generated Oct 12, 2024 at 12:54 PM ET

Primary sclerosing cholangitis sex breakdown

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Primary sclerosing cholangitis age breakdown

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Patient ethnicities

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Data Source: Graphs on this page represent data in electronic health records and self-reported survey results from the All of Us research database. As of July 2024, there are 451,000 sets of electronic health records and over 560,000 participants who have completed initial survey questions. 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.

Primary sclerosing cholangitis top comorbidities/symptoms

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Primary sclerosing cholangitis top autoimmune comorbidities

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* Disease is suspected as autoimmune, but unconfirmed.
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. In the United States, because electronic health records use billing codes for diagnoses, some conditions may not be perfectly captured by these data, especially if the condition is rare. 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.
Anti-inflammatory / specialty medications and supplements

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Primary sclerosing cholangitis top immunosuppressants / autoimmune therapies

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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.
Quick links: Patient-reported 7-day average fatigue General physical health General mental health Social and relationship satisfaction General quality of life Ability to carry out social roles and activities

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Patient-reported 7-day average fatigue General physical health General mental health Social and relationship satisfaction General quality of life Ability to carry out social roles and activities

Patient-reported 7-day average pain
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Patient-reported 7-day average fatigue

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General physical health

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General mental health

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Social and relationship satisfaction

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General quality of life

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Ability to carry out social roles and activities

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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.
Quick links: Patient employment status Patient insurance coverage

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Patient employment status Patient insurance coverage

Concerns about ability to pay
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Feeling unheard by healthcare providers
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Patient employment status

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Patient insurance coverage

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Join the registry!

Data Source: Graphs on this page represent data in electronic health records and self-reported survey results from the All of Us research database. As of July 2024, there are 451,000 sets of electronic health records and over 560,000 participants who have completed initial survey questions. 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.