Publications by authors named "Marilyn Wan"

Background: Large gaps exist in understanding the symptomatic and functional impact of sarcoidosis, a rare multisystem granulomatous disease affecting fewer than 200,000 individuals in the United States. Smartphones could be used for prospective research, especially for rare diseases where organizing large cohorts can be challenging, given their near ubiquitous ownership and ability to track objective and subjective data with increasingly sophisticated technology.

Objective: We aimed to investigate whether smartphones could assess the quality of life (QoL) and physical activity of a large cohort of individuals with sarcoidosis.

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Objective: To describe local recurrence rates and patient-reported outcomes when Mohs micrographic surgery with cytokeratin-7 immunostains (MMS-CK7) is included in the interdisciplinary management of extramammary Paget's disease (EMPD) METHODS: A retrospective study was conducted of EMPD treated with MMS-CK7 as part of an interdisciplinary team at an academic medical center between 2009 and 2016. Local recurrence rates and patient-reported outcomes were determined by record review and patient surveys.

Results: Twenty tumors in 19 patients were treated using MMS-CK7.

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Importance: Palmoplantar pustulosis (PPP) is a is a chronic, orphan disease with limited epidemiological data.

Objective: To describe the clinical characteristics, treatments, longitudinal disease course, and health care utilization in adults with PPP across the US.

Design, Setting, And Participants: This retrospective, longitudinal case series from 20 academic dermatology practices in the US included a consecutive sample of 197 adults who met the European Rare and Severe Psoriasis Expert Network consensus definition for PPP between January 1, 2007, and December 31, 2018.

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Importance: Generalized pustular psoriasis (GPP) is a chronic, orphan disease with limited epidemiological data.

Objective: To describe the clinical characteristics, treatments, longitudinal disease course, and disease-specific health care utilization among patients with GPP across the United States.

Design, Setting, And Participants: A retrospective longitudinal case series involving 95 adults who met the European Rare and Severe Psoriasis Expert Network consensus definition for GPP and were treated at 20 US academic dermatology practices between January 1, 2007, and December 31, 2018.

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Background: Prospective trials have not compared the local recurrence rates of different excision techniques for cutaneous melanomas on the head and neck.

Objective: To determine local recurrence rates of cutaneous head and neck melanoma after wide local excision (WLE), Mohs micrographic surgery (MMS), or staged excision.

Methods: A systematic review of PubMed, EMBASE, and Web of Science identified all English case series, cohort studies, and randomized controlled trials that reported local recurrence rates after surgery for cutaneous head and neck melanoma.

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Background: Perceived stigma among patients with psoriasis (PWP) is associated with poorer quality of life.

Objective: To determine the prevalence and predictors of stigmatizing attitudes that PWP expect and experience from others.

Methods: We conducted a survey using validated outcome measures to assess the extent to which PWP anticipate and perceive stigma from others.

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Objectives: Physical function is a core outcome in PsA. We examined the construct validity and responsiveness of three commonly used instruments to assess physical function in PsA: HAQ disability index (HAQ-DI), MultiDimensional HAQ (MDHAQ) and the Patient-Reported Outcomes Measurement Information System (PROMIS®) Global-10.

Methods: Between 2016 and 2019, patients with PsA were enrolled in the Psoriatic Arthritis Research Consortium longitudinal cohort study in the USA.

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Objective: To examine the construct validity of Routine Assessment of Patient Index Data 3 (RAPID3) and Psoriatic Arthritis Impact of Disease (PsAID) in patients with psoriatic arthritis (PsA). In examining construct validity, we also addressed scores among subgroups with severe psoriasis, poly articular disease, enthesitis, and dactylitis, and evaluated influences of sociodemographic factors and comorbidities (contextual factors) on these patient-reported outcomes (PRO).

Methods: Patients with PsA were enrolled in the Psoriatic Arthritis Research Consortium (PARC) between 2014 and 2016.

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Introduction: Sleep is essential for overall health and well-being, yet more than one-third of adults report inadequate sleep. The prevalence is higher among people with psoriasis, with up to 85.4% of the psoriatic population reporting sleep disruption.

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Background: There are limited data about the impact of narrowband ultraviolet B phototherapy on patient-reported measures of health-related quality of life.

Objective: To evaluate the impact of adalimumab and phototherapy on health-related quality of life.

Methods: We examined patient-reported outcomes from a multicenter, randomized, placebo-controlled trial (ClinicalTrials.

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Background: Psoriasis and biologic therapies have been associated with psychiatric illnesses.

Objective: To determine if persons with psoriasis or those exposed to biologics are more likely to develop a psychiatric illness.

Methods: Retrospective electronic medical records cohort study.

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Background: There has been an increase in the number of psoriasis treatments being investigated in clinical trials. Patients may have undiagnosed issues at the start of a study which may become identified during follow-up as incident medicinal conditions. The prevalence of incidental findings in patients with moderate-to-severe psoriasis presenting for clinical trials is unknown.

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Background: Perceived stigma among patients with psoriasis contributes to poor quality of life.

Objective: To determine the prevalence and predictors of stigmatizing attitudes toward persons with psoriasis among laypersons and medical trainees.

Methods: Laypersons were recruited from Amazon.

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Background: Few data exist to guide surgical management and counseling about local recurrence after surgery of primary male genital melanoma.

Objective: To compile all available data on local recurrence rates after surgery of primary cutaneous melanoma of the penis and scrotum.

Materials And Methods: A systematic review of PubMed, Literatura Latino-Americana e do Caribe em Ciências da Saúde (LILACS), Excerpta Medica database (EMBASE), and Web of Science identified all surgically treated penile and scrotal melanomas that reported local recurrence status and follow-up time.

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Introduction: To design and implement a novel cloud-based digital platform that allows psoriatic patients and researchers to engage in the research process.

Methods: Citizen Pscientist (CP) was created by the National Psoriasis Foundation (NPF) to support and educate the global psoriatic disease community, where patients and researchers have the ability to analyze data. Psoriatic patients were invited to enroll in CP and contribute health data to a cloud database by responding to a 59-question online survey.

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Background: Data evaluating the impact of objectively measured psoriasis severity on type 2 diabetes mellitus (T2DM) risk are lacking.

Objective: To determine the risk for T2DM in patients with psoriasis compared with that in adults without psoriasis, stratified by categories of directly assessed body surface area (BSA) affected by psoriasis.

Methods: A prospective, population-based, cohort study from the United Kingdom in which 8124 adults with psoriasis and 76,599 adults without psoriasis were followed prospectively for approximately 4 years.

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