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Naming and Understanding Rare Diseases: International Classification of Diseases Coding and the Epidemiologic Designations of Idiopathic Pulmonary Arterial Hypertension

Mardi Gomberg-Maitland, MD, FCCP
Author and Funding Information

From the Pulmonary Hypertension Center, University of Chicago Medical Center.

Correspondence to: Mardi Gomberg-Maitland, MD, FCCP, Pulmonary Hypertension Center, University of Chicago Medical Center, 5841 S Maryland Ave MC5403, Chicago, IL 60637; e-mail: mgomberg@medicine.bsd.uchicago.edu


Financial/nonfinancial disclosures: The author has reported to CHEST the following potential conflicts of interest: Actelion, Gilead, Lilly/Icos, Pfizer Inc, Novartis, and United Therapeutics have provided funding to the University of Chicago to support Dr Gomberg-Maitland’s conduct of clinical trials. She has served as a consultant/participant on data safety monitoring boards/steering committee for clinical trials for Actelion, Gilead, Medtronic, and Pfizer Inc. She has a patent filed titled “Compositions and Methods for Treating Pulmonary Hypertension” for the use of sorafenib in pulmonary hypertension (WO/2007/087575).

Reproduction of this article is prohibited without written permission from the American College of Chest Physicians (http://www.chestpubs.org/site/misc/reprints.xhtml).


© 2011 American College of Chest Physicians


Chest. 2011;139(3):482-483. doi:10.1378/chest.10-2167
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Extract

Billing-code-based research, although imperfect, might be a valid measure of trends in disease prevalence and outcomes for an “orphan” disease. The term “orphan” signifies a condition with low prevalence in the population. This indicates both that few clinicians are interested in or capable of studying or treating the disease and that resources to make advances in the care of patients with orphan diseases are limited. There are other consequences of rarity that prevent progress in orphan conditions. For example, it is readily recognized that frequency-based statistics are more challenging to compute precisely for uncommon diseases. Perhaps less well appreciated is the confu­sion created by the language used to describe, report, and categorize a rare condition.

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