scholarly journals Boehringer Ingelheim Summer 2019 Poster Presentation/Clinical Research Data

2020 ◽  
Author(s):  
Giridhar Murali
Keyword(s):  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Clinical Research ◽  
Poster Presentation ◽  
Rare Disease ◽  
Patient Experience ◽  
Idiopathic Pulmonary Fibrosis Patient ◽  
Research Data ◽  
Clinical Research Data

This poster presentation contains clinical research data that was used in order to enhance IPF (Idiopathic Pulmonary Fibrosis) patient experience, and education about the OFEV drug to treat the rare disease. This data and presentation was published internally in Boehringer Ingelheim.

scholarly journals Global incidence and prevalence of idiopathic pulmonary fibrosis

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Toby M. Maher ◽  
Elisabeth Bendstrup ◽  
Louis Dron ◽  
Jonathan Langley ◽  
Gerald Smith ◽  
...  
Keyword(s):  
North America ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
South Korea ◽  
Rare Disease ◽  
Epidemiologic Studies ◽  
Asia Pacific ◽  
Prevalence Estimates ◽  
Definition Of ◽  
Adjusted Incidence

Abstract Background Idiopathic pulmonary fibrosis (IPF) is a progressive debilitating lung disease with considerable morbidity. Heterogeneity in epidemiologic studies means the full impact of the disease is unclear. Methods A targeted literature search for population-based, observational studies reporting incidence and/or prevalence of IPF from January 2009 to April 2020 was conducted. Identified studies were aggregated by country. For countries with multiple publications, a weighted average was determined. Incidence and prevalence data were adjusted for between-study differences where possible. The final model included adjusted estimates of incidence and prevalence per 10,000 of the population with 95% confidence intervals. As prevalence estimates vary depending on the definitions used, estimates were based on a specific case definition of IPF. Results Overall, 22 studies covering 12 countries met the inclusion criteria, with 15 reporting incidence and 18 reporting prevalence estimates. The adjusted incidence estimates (per 10,000 of the population) ranged from 0.35 to 1.30 in Asia–Pacific countries, 0.09 to 0.49 in Europe, and 0.75 to 0.93 in North America. Unadjusted and adjusted incidence estimates were consistent. The adjusted prevalence estimates ranged from 0.57 to 4.51 in Asia–Pacific countries, 0.33 to 2.51 in Europe, and 2.40 to 2.98 in North America. South Korea had the highest incidence and prevalence estimates. When prevalence estimates were compared to country-specific rare disease thresholds, IPF met the definition of a rare disease in all countries except South Korea. There were notable geographic gaps for IPF epidemiologic data. Conclusions Due to differences in study methodologies, there is worldwide variability in the reported incidence and prevalence of IPF. Based on the countries included in our analysis, we estimated the adjusted incidence and prevalence of IPF to be in the range of 0.09–1.30 and 0.33–4.51 per 10,000 persons, respectively. According to these prevalence estimates, IPF remains a rare disease. For consistency, future epidemiologic studies of IPF should take age, sex, smoking status, and the specificity of case definitions into consideration.

scholarly journals Heterogeneity in clinical research data quality monitoring: A national survey

2020 ◽  
Vol 108 ◽  
pp. 103491
Author(s):  
Lauren Houston ◽  
Ping Yu ◽  
Allison Martin ◽  
Yasmine Probst
Keyword(s):  
Clinical Research ◽  
Data Quality ◽  
National Survey ◽  
Research Data ◽  
Quality Monitoring ◽  
Clinical Research Data

scholarly journals Sharing Privacy Protected and Statistically Sound Clinical Research Data Using Outsourced Data Storage

2014 ◽  
Vol 2014 ◽  
pp. 1-12 ◽  
Author(s):  
Geontae Noh ◽  
Ji Young Chun ◽  
Ik Rae Jeong
Keyword(s):  
Clinical Research ◽  
Data Storage ◽  
Clinical Data ◽  
Private Information ◽  
Homomorphic Encryption ◽  
Scientific Progress ◽  
Research Data ◽  
Computing Services ◽  
Public Keys ◽  
Clinical Research Data

It is critical to scientific progress to share clinical research data stored in outsourced generally available cloud computing services. Researchers are able to obtain valuable information that they would not otherwise be able to access; however, privacy concerns arise when sharing clinical data in these outsourced publicly available data storage services. HIPAA requires researchers to deidentify private information when disclosing clinical data for research purposes and describes two available methods for doing so. Unfortunately, both techniques degrade statistical accuracy. Therefore, the need to protect privacy presents a significant problem for data sharing between hospitals and researchers. In this paper, we propose a controlled secure aggregation protocol to secure both privacy and accuracy when researchers outsource their clinical research data for sharing. Since clinical data must remain private beyond a patient’s lifetime, we take advantage of lattice-based homomorphic encryption to guarantee long-term security against quantum computing attacks. Using lattice-based homomorphic encryption, we design an aggregation protocol that aggregates outsourced ciphertexts under distinct public keys. It enables researchers to get aggregated results from outsourced ciphertexts of distinct researchers. To the best of our knowledge, our protocol is the first aggregation protocol which can aggregate ciphertexts which are encrypted with distinct public keys.

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