Rare diseases are rarely without suffering
Most people have never heard of interstitial lung disease. Yet in the U.S., ILDs kill 21,000 annually1— nearly as many as leukemia. Andre Wichmann is working to change that.
In projects that involve real patient data, legal and technical security is our top priority, of course.
Andre Wichmann, Project Manager, Data Privacy and Architecture
Jeganathan N, Sathananthan M. The prevalence and burden of interstitial lung diseases in the USA. ERJ Open Res. 2021 Feb 7;8(1):00630-2021. doi: 10.1183/23120541.00630-2021. PMID: 35141319; PMCID: PMC8819246. (link)
“median time from symptom onset to current diagnosis was 7 months (range, 0–252 months), with 43% of respondents reporting a delay of ≥ 1 year and 19% reporting a delay of ≥ 3 years” - Cosgrove, G.P., Bianchi, P., Danese, S. et al. Barriers to timely diagnosis of interstitial lung disease in the real world: the INTENSITY survey. BMC Pulm Med. 2018 Jan 17;18: art. no. 9. https://doi.org/10.1186/s12890-017-0560-x (link)
“ One question in this regard is how the term “progressive” should be defined. There are no uniformly accepted criteria”- Cottin V, Hirani NA, Hotchkin DL, Nambiar AM, Ogura T, Otaola M, Skowasch D, Park JS, Poonyagariyagorn HK, Wuyts W, Wells AU. Presentation, diagnosis and clinical course of the spectrum of progressive-fibrosing interstitial lung diseases. Eur Respir Rev. 2018 Dec 21;27(150):180076. doi: 10.1183/16000617.0076-2018. PMID: 30578335; PMCID: PMC9489068.(link)
The most common ILD is idiopathic pulmonary fibrosis (IPF) - Cottin V, Hirani NA, Hotchkin DL, Nambiar AM, Ogura T, Otaola M, Skowasch D, Park JS, Poonyagariyagorn HK, Wuyts W, Wells AU. Presentation, diagnosis and clinical course of the spectrum of progressive-fibrosing interstitial lung diseases. Eur Respir Rev. 2018 Dec 21;27(150):180076. doi: 10.1183/16000617.0076-2018. PMID: 30578335; PMCID: PMC9489068. (link)
The average five-year survival rate with IPF is 45.6%. - Qiang Zheng, Ingrid A. Cox, Julie A. Campbell, Qing Xia, Petr Otahal, Barbara de Graaff, Tamera J. Corte, Alan K. Y. Teoh, E. Haydn Walters, Andrew J. Palmer
ERJ Open Research. 2022 Jan;9(3). DOI: 10.1183/23120541.00591-2021 (link)
In comparison, the five-year survival rate for leukemia is 66.7% (U.S.) - National Cancer Institute. Cancer Stat Facts: Leukemia [Internet]. Bethesda, MD: National Cancer Institute. Available from: https://seer.cancer.gov/statfacts/html/leuks.html (link).
This demonstrates the poor comparative prognosis for patients with IPF.