The 2022 Annual Report of DataDerm: The database of the American Academy of Dermatology.

The American Academy of Dermatology (AAD) launched DataDerm in 2016 as the clinical data registry platform of AAD. DataDerm has evolved to be the largest database containing information about dermatology patients in the world. As of December 31, 2021, DataDerm contained data from 13.2 million unique patients and 47.0 million unique patient visits, with 403 practices representing 1670 clinicians actively participating in DataDerm in 2021. Of the 1670 clinicians participating in DataDerm in 2021, the majority were dermatologists (978) followed by physician assistants (375) and nurse practitioners (163) who are employed by AAD members and meet the AAD definition of the AAD DermCare team. Furthermore, in 2021, 834 clinicians submitted data via DataDerm to the Merit-based Incentive Payment System of the Centers for Medicare & Medicaid Services. This article is the third annual report about the status of DataDerm. This year's 2022 annual report presents the progress DataDerm has made over the past year in conjunction with OM1, the data analytics partner of DataDerm, as well as the current status and future plans of DataDerm.

DataDerm: Improving trends in performance measurement.

BACKGROUND: Medicare's legacy quality reporting programs were consolidated into the Merit-Based Incentive Payment System (MIPS) in 2015. PURPOSE: The DataDerm registry of the American Academy of Dermatology was examined to understand the potential for and subsequent rate of improvement across 23 performance measures. METHODS: We examined the level of performance across 23 performance measures with at least 20 clinicians reporting on at least 50 patients' experience. We calculated the following values: the aggregate performance rate for each measure and the overall aggregate performance rate. RESULTS: The aggregate performance rate for each measure ranged from 20.4% for AAD 1 (Psoriasis: Assessment of Disease Activity), to 99.9% for measure ACMS 1 (Avoidance of Opioid Prescriptions for Reconstruction After Skin Resection). Three of 23 measures had an aggregate performance over 95%. The overall aggregate performance rate across all 23 measures was 81.2%, indicating an aggregate potential for improvement of 18.8% across the 23 measures. Nine performance measures reported across the first five years of DataDerm's existence were tracked through time to understand trends in performance through time. The performance across the nine performance measures meeting the inclusion criteria consistently improved in the initial years (2016 through 2018) of DataDerm participation and showed some variation in 2019 and 2020. CONCLUSIONS: These data provide evidence that the very act of participation in a multi-institutional registry and tracking compliance with performance measures can lead to improvements in compliance with the performance measures and therefore improvements in quality of care.

The 2023 Annual Report of DataDerm™: The Database of The American Academy of Dermatology (AAD).

The American Academy of Dermatology (AAD) launched DataDerm™ in 2016 as the clinical data registry platform of AAD. DataDerm has evolved to be the largest database in the world containing information about dermatology patients, capturing information about their course of disease, associated therapeutic interventions, and health outcomes. As of December 31, 2022, DataDerm contained data from 14.2 million unique patients and 53.5 million unique patient visits, with 415 practices representing 1,663 clinicians actively participating in DataDerm in 2022. This article is the fourth in a series of Annual Reports about the status of DataDerm. This year's 2023 annual report presents the progress DataDerm has made in conjunction with OM1, the data analytics partner of DataDerm, with a special highlight on the longitudinal care of common dermatologic conditions in the registry and a detailed focus on skin cancer. Furthermore, we review the current status of DataDerm as a robust representation of real world specialty data, reflecting the day-to-day dermatologic care of patients over time.

Achieving consensus on patient-reported outcome measures in clinical practice for inflammatory skin disorders.

BACKGROUND: International Dermatology Outcome Measures and the American Academy of Dermatology recently agreed on a physician-reported global severity measure to demonstrate quality of care in inflammatory dermatoses. OBJECTIVE: Because patient-reported outcome measures are also important, we aimed to achieve consensus on 1 of these measures for clinical practice. METHODS: Patients and providers participated in a consensus-building study involving a modified-Delphi technique. Voting was focused on identifying a minimal set of assessments for clinical practice, patient global assessments (PtGAs), Skindex instruments, and final instrument selection for quality improvement. RESULTS: Among 53 stakeholders, >70% agreed that identification of patient goals, assessment of treatment harm, and assessment of the adequacy of treatment response were the minimal assessments needed for clinical practice. The most preferred PtGA was a 5-point PtGA (scale 0-4; 0 = clear, 4 = severe) having an optional check-box for worst ever. A new metric to assess change since treatment initiation, which we called a trajectory measure, was proposed. Stakeholders preferred Skindex instruments over PtGAs and a trajectory measure for clinical practice. LIMITATIONS: A small number of patients and caregivers were involved and a consensus was not reached on all items. CONCLUSION: PtGAs as standalone measures do not adequately capture the patient's assessment of disease severity or the effect of care. The combination of a PtGA with a Skindex instrument or another measure of health-related quality of life might provide a more comprehensive evaluation of patients in clinical practice.

The completeness and accuracy of DataDerm: The database of the American Academy of Dermatology.

The utility of any database or registry depends on the completeness and accuracy of the data it contains. This report documents the validity of data elements within DataDerm, the clinical registry database of the American Academy of Dermatology. An external audit of DataDerm, performed by a third-party vendor, involved the manual review of 1098 individual patient charts from calendar year 2018 from 8 different dermatology practices that used 4 different electronic health records. At each site, 142 discrete data fields were assessed, comparing the data within DataDerm to the source data within the electronic health record. Audited data included 3 domains of data elements (diagnoses, medications, and procedures) and a performance measure ("Biopsy Reporting Time-Clinician to Patient"), which is 1 of several measures used by DataDerm as a Qualified Clinical Data Registry. Overall completeness of data was 95.3%, with a range among practices of 90.6% to 98.5%. Overall accuracy of data was 89.8%, with a range of accuracy among practices of 81.2% to 94.1%. These levels of completeness and accuracy exceed the rates in the literature for registries that are based on data that is extracted from electronic health records; and therefore, this audit validates the excellent quality of data in DataDerm.

The 2021 annual report of DataDerm: The database of the American Academy of Dermatology.

The American Academy of Dermatology launched DataDerm in 2016 as the clinical data registry platform of the American Academy of Dermatology. DataDerm has evolved to be the largest database containing information about dermatology patients in the world. As of December 31, 2020, DataDerm contained data from 11.3 million unique patients and 40.0 million unique patient visits, with 782 practices representing 2290 clinicians actively participating in DataDerm. This article is the second in a series of annual reports about the status of DataDerm. While last year's 2020 first annual report presented the history of DataDerm as well as the rationale for its creation, maintenance, and expansion, this year's 2021 annual report presents the progress DataDerm has made over the past year along with its current status and future plans.

The 2020 annual report of DataDerm: The database of the American Academy of Dermatology.

The American Academy of Dermatology launched DataDerm in 2016 as the clinical data registry platform of the American Academy of Dermatology. DataDerm is approved by the Centers for Medicare & Medicaid Services as a Qualified Clinical Data Registry for the Merit-Based Incentive Payment System. The ultimate purpose of DataDerm is to provide dermatologists with a registry and database that will serve as a vehicle to advance the specialty in the domains of science, discovery, education, quality assessment, quality improvement, advocacy, and practice management. DataDerm is currently the largest clinical registry and database of patients receiving dermatologic care in the world. As of December 31, 2019, DataDerm contained data from 10,618,879 unique patients and 32,309,389 unique patient visits. Depending on the reporting period, 800 to 900 practices (representing 2400-2600 clinicians) actively participate in DataDerm by submitting data. This article provides the first of a planned series of annual updates of the status of DataDerm. The purpose of this article is to present the rationale for the creation, maintenance, history, and current status of DataDerm, as well as the future plans for DataDerm.

Clinical context for cancer risk of immunosuppressive agents used in dermatology.

Dermatologic care of inflammatory skin conditions has been transformed over recent decades through the use of small molecules disease-modifying anti-rheumatic drugs and targeted biologic therapies. Alongside the tremendous benefit of these agents, concerns remain regarding possible side effects, particularly cancer risk. To improve guidance and counseling of patients with skin diseases who are considering treatment with such agents, this article reviews available information on the risk of malignancies in patients treated with these agents. When possible, this article adds clinical context to risk through a number needed to harm that estimates the number of patients a provider would need to treat with a given agent in 1 year to cause a single adverse outcome over time.

Validation of the Three-Item Skindex-Mini Among Hidradenitis Suppurativa Patients With Diverse Racial Backgrounds.

BACKGROUND: Hidradenitis suppurativa (HS) is a chronic inflammatory skin disease that severely impairs patients' quality of life (QoL). Instruments such as the 10-item Dermatology Life Quality Index and 16-item Skindex-16 have been used to assess QoL in HS; however, it is unknown whether the shorter 3-item Skindex-mini can also provide an accurate assessment of skin-related QoL in patients with HS. OBJECTIVES: The aim was to assess how well the Skindex-16 correlates with its shorter adaptation, the Skindex-mini, in capturing QoL among patients with HS. METHODS: This retrospective cross-sectional study included all HS patients seen in the HS Clinic at The Emory Clinic between January 1, 2019, and August 16, 2019. We compared the correlation between the symptom, emotion, and function domains of the Skindex-16 and Skindex-mini using Pearson correlation coefficients (CC). Secondary outcome measures included individual survey item analysis, ItchyQuant scores, and numeric rating scale of pain. RESULTS: We identified 108 encounters among 75 unique hidradenitis suppurativa patients (43 black/African American, 18 white, 5 Asian/Pacific Islander, 3 Latino, 4 Other, 2 unknown). Pearson CC between the Skindex-16 and Skindex-mini domain scores for all encounters were 0.770 (P < .001), 0.787 (P < .001), and 0.801 (P < .001) for the symptom, emotion, and function domains, respectively. The mean pain and ItchyQuant scores were 4.14 (SD 3.31) and 3.55 (SD 3.34), respectively. CONCLUSIONS: The Skindex-mini correlated highly with the Skindex-16 in a racially diverse group of patients with HS. The Skindex-mini is a streamlined QoL instrument that could be practically implemented into routine clinical care among diverse patients presenting to dermatology.

Emerging therapies for atopic dermatitis: TRPV1 antagonists.

Transient receptor potential (TRP) ion channels are important mediators of somatosensory signaling throughout the body. Our understanding of the contribution of TRPs to a multitude of cutaneous physiologic processes has grown substantially in the past decade. TRP cation channel subfamily V member 1 (TRPV1), one of the better-understood members of this large family of ion channels, affects multiple pathways involved in pruritus. Further, TRPV1 appears to play a role in maintaining skin barrier function. Together, these properties make TRPV1 a ripe target for new therapies in atopic dermatitis. Neurokinin antagonists may affect similar pathways and have been studied to this effect. Early trials data suggest that these therapies are safe, but assessment of their efficacy in atopic dermatitis is pending as we await publication of phase II and III clinical trials data.

Developing biomarkers for predicting clinical relapse in pemphigus patients treated with rituximab.

BACKGROUND: Rituximab is an effective therapy for pemphigus, although relapses are common. OBJECTIVE: To identify biomarkers to predict relapse of pemphigus following rituximab treatment. METHODS: In this retrospective cohort study, 62 patients with pemphigus treated with 99 rituximab cycles provided longitudinal clinical scoring and biomarker data, including levels of CD19+ B cells, CD4+ T cells, and desmoglein 1 (Dsg1) and desmoglein 3 (Dsg3) autoantibodies. An extended time-variant Kaplan-Meier estimator and extended Cox model were applied. RESULTS: Relapse was rare before B-cell repopulation. Univariate analysis revealed low CD4 count (<400 cells/µL) to predict relapse (P < .001). A positive result of testing for Dsg1 (>20 IU) was predictive of relapse among patients with mucocutaneous disease (hazard ratio, 6.40; P = .019); a positive result of testing for Dsg3 (>20 IU) was predictive in patients with mucocutaneous and mucosal disease (hazard ratio, 32.92; P < .001). Multivariable analysis revealed that every CD4 value increase of 200 decreases the hazard ratio for relapse by 35% (P = .029). A positive result of testing for Dsg1 increases the risk for relapse by a factor of 12.32 in patients with mucocutaneous disease (P = .001); positive result of testing for Dsg3 increases risk for relapse by 28.38 in patients with mucosal and mucocutaneous disease (P = .006). LIMITATIONS: Limitations include the retrospective design and inconsistent follow-up. CONCLUSION: Relapse is associated with B-cell repopulation, low CD4+ T -cell count, and positive result of testing for Dsg1 and Dsg3.

Rituximab combined with conventional therapy versus conventional therapy alone for the treatment of mucous membrane pemphigoid (MMP).

BACKGROUND: The use of rituximab for refractory autoimmune blistering diseases is increasing. Data related to rituximab for the treatment of mucous membrane pemphigoid (MMP) are limited. OBJECTIVE: We sought to compare the efficacy of adding rituximab with traditional immunosuppressive therapies in the treatment of MMP. The primary outcome was achievement and time to disease control. METHODS: Patients with a diagnosis of MMP from August 2001 to June 2015 who had greater than 6 months of follow-up after the initiation of therapy were reviewed. RESULTS: In all, 24 patients were treated with rituximab and 25 were treated with conventional immunosuppression. Of patients, 100% in the rituximab group achieved disease control compared with 40% in the conventional group (P < .01), with a mean time to disease control of 10.17 months and 37.7 months (P = .02). Adverse events were seen in 33% of patients after rituximab, compared with 48% of patients in the conventional group (P = .2). LIMITATIONS: Rituximab dosing was not uniform and the 2 groups were not matched in terms of disease severity, nor were they randomized. CONCLUSIONS: Our study indicates that the addition of rituximab to conventional therapy in patients with MMP results in more rapid and sustained disease control with potentially fewer adverse events.

Discordance of histopathologic parameters in cutaneous melanoma: Clinical implications.

BACKGROUND: Histopathologic analysis remains the gold standard for the diagnosis of melanoma, however previous studies have shown a substantial rate of interobserver variability in the evaluation of melanocytic lesions. OBJECTIVE: We sought to evaluate discordance in the histopathological diagnosis and microstaging parameters of melanoma and subsequent impact on clinical management. METHODS: This was a retrospective review of 588 cases of cutaneous melanoma and melanoma in situ from January 2009 to December 2014 that were referred to Emory University Hospital, Atlanta, GA, for treatment. Per institutional policy, all outside melanoma biopsy specimens were reviewed internally. Outside and institutional reports were compared. RESULTS: Disagreement between outside and internal reports resulted in a change in American Joint Committee on Cancer pathologic stage in 114/588 (19%) cases, resulting in a change in management based on National Comprehensive Cancer Network guidelines in 105/588 (18%) cases. LIMITATIONS: Given the retrospective nature of data collection and the bias of a tertiary care referral center, cases in this study may not be representative of all melanoma diagnoses. CONCLUSION: These findings confirm consistent subjectivity in the histopathologic interpretation of melanoma. This study emphasizes that a review of the primary biopsy specimen may lead to significant changes in tumor classification, resulting in meaningful changes in clinical management.

Azathioprine treatment of intractable pruritus: A retrospective review.

BACKGROUND: Chronic, severe, treatment-resistant and life-altering pruritus is challenging for both clinician and patient. Pruritus in this population of patients may be immune mediated and respond to immunosuppression, but this approach to treatment has not been investigated in depth. OBJECTIVE: We sought to determine the efficacy and tolerability of azathioprine in the treatment of chronic pruritus responsive to systemic corticosteroids. METHODS: This was a retrospective review of the outcomes of treatment in 96 patients with systemic steroid-responsive pruritus treated with azathioprine. RESULTS: Mean duration of symptoms before treatment was 52.9 months (range 2-360 months, SD 64.8); pretreatment visual analog scale itch score was 9.25/10 (range 3-10, SD 1.37); posttreatment itch was 1.625/10 (range 0-8, SD 1.67) (P < .0001). Suspected drug-related adverse effects developed in 62 (65%) patients and 32 (33%) patients had to permanently discontinue treatment. LIMITATIONS: Because of the uncontrolled retrospective design there were variations in azathioprine dosing. CONCLUSION: Among patients with an extensive history of intractable and life-altering pruritus, therapy with azathioprine may provide substantial relief of symptoms.