alexa Prevalence of Diagnosed/Highly Symptomatic Pachyonychia Congenita (PC) Patients Managed Annually by US Dermatologists-National Real World Occurrence (RWO) Physician Study| Abstract
ISSN: 2376-0427

Dermatology and Dermatologic Diseases
Open Access

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  • Research Article   
  • J Dermatol Dis,

Prevalence of Diagnosed/Highly Symptomatic Pachyonychia Congenita (PC) Patients Managed Annually by US Dermatologists-National Real World Occurrence (RWO) Physician Study

Jack R Gallagher1*, David Lapidus2, Kylee Heap1 and Susan Carroll1
1Clarity Pharma Research, LLC, Spartanburg, South Carolina, USA
2LapidusData, Inc., Brookline, Massachusetts, USA
*Corresponding Author : Jack R Gallagher, Clarity Pharma Research, LLC, 2375 E. Main St., Suite A300, Spartanburg, South Carolina, USA, 29307, USA, Tel: +864-208-0092, Email: [email protected]

Received Date: Jun 05, 2019 / Accepted Date: Jul 19, 2019 / Published Date: Jul 26, 2019

Abstract

Background: Pachyonychia Congenita (PC) is a chronically debilitating and lifelong genetic disease that typically causes constant, disabling pain. PC appears to be rare, but its prevalence is unsubstantiated by large-scale epidemiologic studies. We conducted the first national prevalence study of a cohort of PC patients, those managed annually by US dermatologists.

Methods: Potential study participants were randomly selected from a national panel of patient-care dermatologists and invited to participate in a brief study of a patient condition that would be disclosed at the study website.

Results: Of the 423 dermatologists contacted, 400 participated, of whom 53% reported managing at least one PC patient during the past 12 months, an annual prevalence of 6.4/10,000 patients (extrapolated to 8,900 to 9,800 nationally), according to the study model.

Conclusions: Study findings indicate PC is likely to be far more prevalent than previous estimates in the literature and that the frequency and level of disability caused by pain-related symptoms may be under-recognized by the treating dermatologist. Additional research is needed to determine the extent to which PC diagnosis has been or could be genetically confirmed.

Keywords: Pachyonychia Congenita (PC); Prevalence; Real World; Epidemiologic survey

Citation: Gallagher JR, Lapidus D, Heap K, Carroll S (2019) Prevalence of Diagnosed/Highly Symptomatic Pachyonychia Congenita (Pc) Patients Managed Annually by US Dermatologists-National Real World Occurrence (RWO) Physician Study . J Dermatol Dis 6: 280.

Copyright: © 2019 Gallagher JR, et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

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