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Editorial
. 2019 Apr;6(2):126-128.
doi: 10.15326/jcopdf.6.2.2019.0133.

Rare Disease Registries: Steps Forward

Charlie Strange  1
Affiliations
Editorial

Rare Disease Registries: Steps Forward

Charlie Strange. Chronic Obstr Pulm Dis. 2019 Apr.
No abstract available

Keywords: alpha-1 antitrypsin deficiency; bronchiectasis; ciliary; immunodeficiency; registry.

PubMed Disclaimer

Conflict of interest statement

Dr. Strange has grants with the Alpha-1 Foundation, CSL Behring, Grifols, MatRx, Takeda/Shire and Vertex on emphysema due to alpha-1 antitrypsin deficiency. He consults for AstraZeneca and GlaxoSmithKline on COPD. He is a medical director at AlphaNet, a disease management company for alpha-1 antitrypsin deficiency.

Comment on

  • Chronic Obstr Pulm Dis. 6:145.

References

    1. Aksamit TR,O’Donnell AE,Barker A,et al. Adult patients with bronchiectasis: a first look at the US Bronchiectasis Research Registry. Chest. 2017;151(5):982-992. doi: https://doi.org/10.1016/j.chest.2016.10.055 - PMC - PubMed
    1. Eden E,Choate R,Barker A,et al. The clinical features of bronchiectasis associated with alpha-1 antitrypsin deficiency, common variable immunodeficiency and primary ciliary dyskinesia--results from the U.S. Bronchiectasis Research Registry. Chronic Obstr Pulm Dis. 2019;6(2):145-151. doi: https://doi.org/10.15326/jcopdf.6.2.2018.0156 - PMC - PubMed
    1. Lynch DA,Austin JHM,Hogg JC,et al. CT definable subtypes of COPD: a statement of the Fleischner Society. Radiology. 2015;277(1):192-205. doi: https://dx.doi.org/10.1148%2Fradiol.2015141579 - PMC - PubMed

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