Authors:

Jack R Gallagher1*, David Lapidus2, Kylee Heap1 and Susan Carroll1

1Clarity Pharma Research, LLC, Spartanburg, South Carolina, USA

2LapidusData, Inc., Brookline, Massachusetts, USA

Source:

Dermatology and Dermatologic Diseases

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

Read the whole study in the PDF file BELOW

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.