Modeling Rare Disease Datasets with ART-DECOR.

This paper presents ongoing work on the modeling of different datasets using the ART-DECOR modeling tool, with a focus on adherence to the FAIR principles (Findable, Accessible, Interoperable, and Reusable). The successful modeling of the French minimal dataset for rare diseases (Set de donnees minimal des maladies rares (SDM-MR.fr)) should provide inspiration for the development of the German minimal dataset for rare diseases (Minimalbasisdatensatz fur Seltene Erkrankungen (MBDS-SE.

Patients' preferences for systemic treatment of atopic dermatitis: safety and efficacy count the most.

Background: The advent of biologics and janus kinase inhibitors has revolutionized treatment of atopic dermatitis (AD).

Objective: To investigate preferences of patients with AD for attributes of currently approved systemic treatments and assess influencing factors.

Methods: An online discrete choice experiment was conducted in patients with AD throughout Germany to analyze preferences for outcome (probability of (almost) clear skin at week 16, probability of significant itch improvement, time to onset of itch relief and type of side effects) and process attributes (application method and frequency of laboratory tests).

Treatment satisfaction of patients with psoriasis with topical therapy in a real-world setting: unmet need for higher effectiveness.

Background: Topical medication is the mainstay for treatment of mild psoriasis. However, dissatisfaction with topicals is common and rates of non-adherence are high. Assessing patients' perspectives can help to identify unmet needs.

Patient Preferences in Hidradenitis Suppurativa (APProach-HS): a discrete choice experiment.

Background And Objectives: Treatment options for moderate-to-severe hidradenitis suppurativa (HS) comprise antibiotics, biologics, and different surgical methods. These approaches differ substantially regarding the treatment process, success rates, and adverse events. However, information on patient preferences for HS therapies is hitherto scarce.

Effects of the COVID-19 pandemic on care of melanoma patients in Berlin, Germany: the Mela-COVID survey.

Background: The COVID-19 pandemic imposes major challenges for care of cancer patients.

Objectives: Our aim was to assess the effects of the pandemic on treatment and appointments of patients with malignant melanoma based on a large skin cancer centre in Berlin, Germany, and identify reasons for, and impact factors associated with these changes.

Materials & Methods: Patients with melanoma treated from January 1st 2019 received a postal survey with questions on impairment due to the pandemic, fear of COVID-19, fear of melanoma, changes in therapy and/or appointments, including reasons for the changes.

Melanomversorgung während eines Jahres Pandemie in Berlin: abnehmende Terminstornierungen trotz zunehmender Besorgnis über COVID-19.

Hintergrund Und Ziele: Die COVID-19-Pandemie stellt für Krebspatienten eine große Herausforderung dar. Unser Ziel war es, ihren Einfluss auf die Behandlung und auf Arzttermine von Melanompatienten nach einem Jahr Pandemie zu untersuchen.

Patienten Und Methodik: Melanompatienten, die im Vivantes Hauttumorzentrum in Berlin behandelt wurden, beantworteten eine postalische Umfrage zu Pandemie-bedingten Änderungen ihrer Melanomversorgung.

Melanoma care during one year pandemic in Berlin: decreasing appointment cancellations despite increasing COVID-19 concern.

Background And Objectives: The COVID-19 pandemic poses a great challenge for cancer patients. Our aim was to assess its influence on treatment and appointments of melanoma patients after one year of pandemic.

Methods: Melanoma patients treated in the Vivantes Skin Cancer Centre in Berlin, Germany completed a postal survey on pandemic-related alterations in melanoma care.

Patient preferences for topical psoriasis treatments: a discrete choice experiment.

Background: Topical medication continues to be the most frequently prescribed therapy for psoriasis. However, patients are often dissatisfied with their topical medication, and adherence to this type of therapy is particularly poor.

Objective: To investigate the preferences of patients with psoriasis regarding the process and outcome attributes associated with topical treatments and to assess influencing factors.

Gamification in software engineering: the mediating role of developer engagement and job satisfaction.

Gamification seeks to encourage behavior of participants by borrowing elements of games, such as scoring points. Few rigorous studies exist of gamification in software organizations, and several questions have remained unanswered, for example, what might drive developers to partake, and what are the consequences of developer engagement. This article seeks to provide some answers through a rigorous empirical study at one organization that created an internal gamification platform.

Drug survival rates and reasons for drug discontinuation in patients with atopic dermatitis: a retrospective study of adult outpatients.

Background: Treatment of moderate-to-severe atopic dermatitis (AD) can be challenging and little is known about the sustainability of on- and off-label prescribed systemic therapies.

Objectives: To compare drug survival (DS) rates and reasons for drug discontinuation of cyclosporine A (CyA), dupilumab (DUP), azathioprine (AZA), methotrexate (MTX) and mycophenolate mofetil (MMF) prescribed under real-world conditions.

Materials & Methods: In this retrospective study, 139 treatment courses for 94 adults with AD treated at two German dermatology departments were analysed.

Psoriasis care during the time of COVID-19: real-world data on changes in treatments and appointments from a German university hospital.

Background: COVID-19 poses significant challenges for care of patients with chronic inflammatory skin diseases including psoriasis.

Objectives: To investigate changes in treatment and/or appointments for psoriasis patients in a German university hospital due to the pandemic.

Materials & Methods: A postal survey was conducted between May 15 and June 15, 2020.

Cooperative treatment effectiveness of ATR and HSP90 inhibition in Ewing's sarcoma cells.

Introduction: Ewing's sarcoma is an aggressive childhood malignancy whose outcome has not substantially improved over the last two decades. In this study, combination treatments of the HSP90 inhibitor AUY922 with either the ATR inhibitor VE821 or the ATM inhibitor KU55933 were investigated for their effectiveness in Ewing's sarcoma cells.

Methods: Effects were determined in p53 wild-type and p53 null Ewing's sarcoma cell lines by flow cytometric analyses of cell death, mitochondrial depolarization and cell-cycle distribution as well as fluorescence and transmission electron microscopy.

Effects of a 90-min educational intervention for patients with insect venom allergy: a prospective controlled pilot study.

Background: Anaphylactic sting reactions need a prompt management. A structured educational intervention for patients with insect sting allergy has not been implemented so far. The purpose of this study was to analyze the effects of a structured 90-min educational intervention for patients with insect sting allergy.

Patient preferences for treatment of advanced melanoma: impact of comorbidities.

Background And Objectives: Choice of treatment for advanced melanoma is crucially influenced by comorbidities and patient preferences. Our study aimed to investigate the impact of comorbidities on preferences.

Patients And Methods: 150 patients with melanoma stage IIC-IV completed a discrete choice experiment to determine preferences for outcome (overall response rate [ORR], 2-year survival, progression-free survival [PFS], time to response [TTR], kind of adverse events [AE], AE-related treatment discontinuation) and process attributes (frequency and route of administration [RoA], frequency of consultations) of systemic melanoma treatments.

Treatment of acrodermatitis continua of Hallopeau: A case series of 39 patients.

Acrodermatitis continua of Hallopeau (ACH) is a rare chronic inflammatory skin disease. Treatment is extremely challenging and mostly based on empirics as there is only scarce evidence from case reports and few small case series. In this retrospective study, patients with ACH treated at five university medical centers were analyzed according to patient and disease characteristics and treatment experience.

Sex Differences in Adults with Insect Venom Allergy regarding Psychological Distress, Attitudes toward the Emergency Medication, and Factual Knowledge about the Disease.

Background: Hymenoptera venom allergy (HVA) has a prevalence of 3% in adults. Although patients have no ongoing symptoms, they often suffer from an impairment of their psychological well-being and quality of life.

Objective: The aim of this study was to analyze sex-specific differences regarding the psychological burden caused by this allergy and handling of the emergency medication.

Patient Preferences in Adjuvant and Palliative Treatment of Advanced Melanoma: A Discrete Choice Experiment.

Treatment paradigms for advanced melanoma have changed fundamentally over recent years. A discrete choice experiment was performed to explore patient preferences regarding outcome (overall response rate, 2-year survival rate, progression-free survival, time to response, type of adverse events, probability of adverse event-related treatment discontinuation) and process attributes (frequency and route of administration, frequency of consultations) of modern treatments for melanoma. Mean preferences of 150 patients with melanoma stage IIC-IV were highest for overall response rate (relative importance score (RIS) 26.

Analyzing the value of an educational program for psoriasis patients: a prospective controlled pilot study.

Background: Psoriasis is a chronic inflammatory skin disease associated with a reduced life-quality. Severe disease forms put the patients at risk for life-treating cardiovascular events, metabolic, and other immune-mediated disorders. Psoriasis patients are often not sufficiently informed about their condition leading to suboptimal treatment adherence and, consequently, worse patient outcome.