Detecting rare diseases in electronic health records using machine learning and knowledge engineering: Case study of acute hepatic porphyria
Cohen, Aaron M, Chamberlin, Steven, Deloughery, Thomas, Nguyen, Michelle, Bedrick, Steven, Meninger, Stephen, Ko, John J, Amin, Jigar J, Wei, Alex J, Hersh, William
Published in PloS one (02.07.2020)
Published in PloS one (02.07.2020)
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Journal Article
Efficacy and safety of givosiran for acute hepatic porphyria: 24‐month interim analysis of the randomized phase 3 ENVISION study
Ventura, Paolo, Bonkovsky, Herbert L., Gouya, Laurent, Aguilera‐Peiró, Paula, Montgomery Bissell, D., Stein, Penelope E., Balwani, Manisha, Anderson, D. Karl E., Parker, Charles, Kuter, David J., Monroy, Susana, Oh, Jeeyoung, Ritchie, Bruce, Ko, John J., Hua, Zhaowei, Sweetser, Marianne T., Sardh, Eliane
Published in Liver international (01.01.2022)
Published in Liver international (01.01.2022)
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Journal Article
Patient and caregiver experiences of living with acute hepatic porphyria in the UK: a mixed-methods study
Gill, Liz, Burrell, Sue, Chamberlayne, John, Lombardelli, Stephen, Mora, Jordanna, Mason, Nicola, Schurer, Marieke, Merkel, Madeline, Meninger, Stephen, Ko, John J
Published in Orphanet journal of rare diseases (26.04.2021)
Published in Orphanet journal of rare diseases (26.04.2021)
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Journal Article
Correction: Detecting rare diseases in electronic health records using machine learning and knowledge engineering: Case study of acute hepatic porphyria
Cohen, Aaron M, Chamberlin, Steven, Deloughery, Thomas, Nguyen, Michelle, Bedrick, Steven, Meninger, Stephen, Ko, John J, Amin, Jigar J, Wei, Alex H, Hersh, William
Published in PloS one (20.08.2020)
Published in PloS one (20.08.2020)
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Journal Article
Quantifying the impact of symptomatic acute hepatic porphyria on well‐being via patient‐reported outcomes: Results from the Porphyria Worldwide Patient Experience Research (POWER) study
Dickey, Amy, Wheeden, Kristen, Lyon, Desiree, Burrell, Sue, Hegarty, Sean, Falchetto, Rocco, Williams, Edrin R., Barman‐Aksözen, Jasmin, DeCongelio, Marc, Bulkley, Alison, Matos, Joana E., Mnif, Tarek, Mora, Jordanna, Ko, John J., Meninger, Stephen, Lombardelli, Stephen, Nance, Danielle
Published in JIMD reports (01.01.2023)
Published in JIMD reports (01.01.2023)
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Journal Article
The Impact of Disease-Modifying Therapy Access Barriers on People With Multiple Sclerosis: Mixed-Methods Study
Simacek, Kristina F, Ko, John J, Moreton, Debbie, Varga, Stefan, Johnson, Kristen, Katic, Bozena J
Published in Journal of medical Internet research (30.10.2018)
Published in Journal of medical Internet research (30.10.2018)
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Journal Article
Outcomes-Based Contracting Experience: Research Findings from U.S. and European Stakeholders
Nazareth, Tara, Ko, John J, Sasane, Rahul, Frois, Christian, Carpenter, Stephen, Demean, Sebastian, Vegesna, Ashok, Wu, Eric, Navarro, Robert P
Published in Journal of managed care & specialty pharmacy (01.10.2017)
Published in Journal of managed care & specialty pharmacy (01.10.2017)
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Journal Article
Patient Perspective on Acute Hepatic Porphyria with Sporadic Attacks: A Chronic Disease with Substantial Health-Related Quality of Life Impacts
Wheeden, Kristen, Lyon Howe, Desiree, Burrell, Sue, Gill, Liz, Chamberlayne, John, Williams, Edrin R., Simon, Amy, Ko, John J., Mora, Jordanna, Wells, Ted, Evans, Christopher, Paulich, Maggie, Meninger, Stephen, Lombardelli, Stephen
Published in Advances in therapy (01.09.2022)
Published in Advances in therapy (01.09.2022)
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Journal Article
S1170 Efficacy and Safety of Givosiran in Patients With Acute Hepatic Porphyria: 24-Month Interim Analysis of the Phase 3 ENVISION Randomized Clinical Trial
Bonkovsky, Herbert L., Ventura, Paolo, Gouya, Laurent, Peiró, Paula Aguilera, Bissell, D. Montgomery, Stein, Penelope E., Anderson, Karl E., Monroy, Susana, Kuter, David J., Oh, Jeeyoung, Ko, John J., Hua, Zhaowei, Sweetser, Marianne T., Sardh, Eliane
Published in The American journal of gastroenterology (01.10.2021)
Published in The American journal of gastroenterology (01.10.2021)
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Journal Article
Real World Analysis of Symptoms, Diagnostic Patterns, and Provider Perspective on Acute Hepatic Porphyrias: 901
Ko, John J., Murray, Sarah, Merkel, Madeline, Karki, Chitra, Krautwurst, Katherine, Mustafina, Renata, Agarwal, Sonalee
Published in The American journal of gastroenterology (01.10.2018)
Published in The American journal of gastroenterology (01.10.2018)
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Journal Article
S1253 POWER (Porphyria Worldwide Patient Experience Research) Study: Impact of Acute Hepatic Porphyria Assessed Through an International Patient Survey
Dickey, Amy, Meninger, Stephen L., Mora, Jordanna, LCGC, Ko, John J., Le, May T., Jain, Siddharth, DeCongelio, Marc, Bulkley, Alison, Matos, Joana E., Mnif, Tarek, Wheeden, Kristen, Lyon, Desiree H., Burrell, Sue, Hegarty, Sean, Falchetto, Rocco, Williams, Edrin R., Barman-Aksözen, Jasmin, Nance, Danielle
Published in The American journal of gastroenterology (01.10.2021)
Published in The American journal of gastroenterology (01.10.2021)
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Journal Article
The Patient Odyssey to Confirmed Acute Hepatic Porphyria Diagnosis: Clinical Characteristics and Healthcare Utilization of Patients Preceding Diagnosis of Acute Hepatic Porphyria: 900
Rudnick, Sean R., Pedro, Hélio, Merkel, Madeline, Ko, John J., Simon, Amy, Johnson, Barbara H., Cole, Ashley L., Noxon, Virginia, Agarwal, Sonalee
Published in The American journal of gastroenterology (01.10.2018)
Published in The American journal of gastroenterology (01.10.2018)
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Journal Article
The Impact of Price Reductions After Loss of Exclusivity in a Cost-Effectiveness Analysis: Fingolimod Versus Interferon Beta-1a for the Treatment of Relapsing-Remitting Multiple Sclerosis
Hua, Le H, Hersh, Carrie M, Morten, Peter, Kusel, Jeanette, Lin, Feng, Cave, Julie, Varga, Stefan, Herrera, Vivian, Ko, John J
Published in Journal of managed care & specialty pharmacy (01.04.2019)
Published in Journal of managed care & specialty pharmacy (01.04.2019)
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Journal Article
Persistency, medication prescribing patterns, and medical resource use associated with multiple sclerosis patients receiving oral disease-modifying therapies: a retrospective medical record review
Nazareth, Tara, Friedman, Howard S, Navaratnam, Prakash, Herriott, Denise A, Ko, John J, Barr, Peri, Sasane, Rahul
Published in BMC neurology (29.09.2016)
Published in BMC neurology (29.09.2016)
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Journal Article
S1105 Disease Burden and Healthcare Utilization Among Patients With Acute Intermittent Porphyria Experiencing Chronic Pain: Analyses From a National Healthcare Database
Silver, Samuel, Erwin, Angelika L., Meninger, Stephen, Tkacz, Joseph, Noxon, Virginia, Ko, John J.
Published in The American journal of gastroenterology (01.10.2020)
Published in The American journal of gastroenterology (01.10.2020)
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Journal Article
482 Prevalence and Predictors of Symptom Complexes Commonly Seen in Acute Hepatic Porphyria in the General Population
Lakhoo, Krutika, Almario, Christopher, Ko, John J., Wei, Alex, Meninger, Stephen, Spiegel, Brennan
Published in The American journal of gastroenterology (01.10.2019)
Published in The American journal of gastroenterology (01.10.2019)
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Journal Article
1025 Frequency of Diagnosed Acute Intermittent Porphyria in a National Health Care Database
Silver, Samuel, Erwin, Angelika L., Meninger, Stephen, Ko, John J., Tkacz, Joseph, Noxon, Virginia, Conradt, Christian
Published in The American journal of gastroenterology (01.10.2019)
Published in The American journal of gastroenterology (01.10.2019)
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Journal Article
Eighteen-Month Interim Analysis of Efficacy and Safety of Givosiran, an RNAi Therapeutic for Acute Hepatic Porphyria, in the Envision Open Label Extension
Kuter, David J., Keel, Sioban, Parker, Charles J., Rees, David C., Stölzel, Ulrich, Ventura, Paolo, Balwani, Manisha, Gouya, Laurent, Simon, Amy, Liu, Shangbin, Ko, John J, Rhyee, Sean, Silver, Samuel M.
Published in Blood (05.11.2020)
Published in Blood (05.11.2020)
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Inside Front Cover
Ventura, Paolo, Bonkovsky, Herbert L, Gouya, Laurent, Paula Aguilera‐Peiró, D Montgomery Bissell, Stein, Penelope E, Balwani, Manisha, Anderson, D Karl E, Parker, Charles, Kuter, David J, Monroy, Susana, Oh, Jeeyoung, Ritchie, Bruce, Ko, John J, Hua, Zhaowei, Sweetser, Marianne T, Sardh, Eliane
Published in Liver international (01.01.2022)
Published in Liver international (01.01.2022)
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Journal Article