Publications
Below you can find a list of our published research.
Below you can find a list of our published research.
6 results
The New England journal of medicine, Volume 390, Issue 4, 1 1 2024, Pages 387 Liver Transplantation. Kappe NN, Stolk J, van Hoek B
COPD, Volume 20, Issue 1, 1 1 2023, Pages 292-297 Governmental Non-Pharmaceutical Interventions during the COVID-19 Pandemic and the COPD Exacerbation and Respiratory Infection Rate in Patients with Alpha-1 Antitrypsin Deficiency. Kappe NN, Alagem N, Tov N, Stolk J
During the COVID-19 pandemic the number of hospital admissions due to chronic obstructive pulmonary disease (COPD) exacerbations was significantly reduced. The reason for this decline is not fully understood. Governmental non-pharmaceutical interventions (NPI's), an increase in community treated exacerbations, or healthcare avoidance by patients, are potential reasons. For the current study, the impact of Dutch governmental NPI's on the COPD exacerbations and respiratory infections rat... Abstract
The British journal of dermatology, Volume 188, Issue 6, 1 1 2023, Pages 808-810 Factors associated with disease-specific life impact in patients with hidradenitis suppurativa: results from the Global VOICE project. Garg A, Rawal S, Akilov O, Alavi A, Ardon C, Bechara FG, Cohen AD, Cohen SR, Daveluy S, Del Marmol V, Delage M, Esmann S, Fisher S, Giamarellos-Bourboulis EJ, Glowaczewska A, Goldfarb N, Brant EG, Grimstad Ø, Guilbault S, Hamzavi I, Hughes R, Ingram JR, Jemec GBE, Ju Q, Kappe N, Kirby B, Kirby JS, Lowes MA, Matusiak L, Micha S, Micheletti RG, Miller AP, Moseng D, Naik HB, Nassif A, Nikolakis G, Paek SY, Pascual JC, Prens E, Resnik B, Riad H, Sayed C, Smith SD, Soliman Y, Szepietowski JC, Tan J, Thorlacius L, Tzellos T, van der Zee HH, Villumsen B, Wang L, Zouboulis CC, Strunk A
International journal of molecular sciences, Volume 24, Issue 3, 27 4 2023, Pages 2485 Fibrosis-Related Gene Profiling in Liver Biopsies of PiZZ α1-Antitrypsin Children with Different Clinical Courses. Kamp JC, Kappe NN, Moro CF, Fuge J, Kuehnel MP, Wrenger S, Welte T, Hoek BV, Jonigk DD, Khedoe PPSJ, Strnad P, Björnstedt M, Stolk J, Janciauskiene S, Nemeth A
PiZZ (Glu342Lys) α1-antitrypsin deficiency (AATD) is characterized by intrahepatic AAT polymerization and is a risk factor for liver disease development in children. The majority of PiZZ children are disease free, hence this mutation alone is not sufficient to cause the disease. We investigated Z-AAT polymers and the expression of fibrosis-related genes in liver tissues of PiZZ children with different clinical courses. Liver biopsies obtained during 1979-2010 at the Department of Paediatrics, Ka... Abstract
Cited 2 times since 2022 (1.2 per year) source: EuropePMC
The British journal of dermatology, Volume 187, Issue 6, 3 1 2022, Pages 927-935 Factors associated with treatment satisfaction in patients with hidradenitis suppurativa: results from the Global VOICE project. Midgette B, Strunk A, Akilov O, Alavi A, Ardon C, Bechara FG, Cohen AD, Cohen S, Daveluy S, Del Marmol V, Delage M, Esmann S, Fisher S, Giamarellos-Bourboulis EJ, Glowaczewska A, Goldfarb N, Brant EG, Grimstad Ø, Guilbault S, Hamzavi I, Hughes R, Ingram JR, Jemec GBE, Ju Q, Kappe N, Kirby B, Kirby JS, Lowes MA, Matusiak L, Micha S, Micheletti R, Miller AP, Moseng D, Naik H, Nassif A, Nikolakis G, Paek SY, Pascual JC, Prens E, Resnik B, Riad H, Sayed C, Smith SD, Soliman Y, Szepietowski JC, Tan J, Thorlacius L, Tzellos T, van der Zee HH, Villumsen B, Wang L, Zouboulis C, Garg A
Background: Nearly half of patients with hidradenitis suppurativa (HS) report dissatisfaction with their treatment. However, factors related to treatment satisfaction have not been explored. Objectives: To measure associations between treatment satisfaction and clinical and treatment-related characteristics among patients with HS. Methods: Treatment satisfaction was evaluated utilizing data from a cross-sectional global survey of patients with HS recruited from 27 institutions, mainly HS referra... Abstract
Cited 74 times since 2019 (15.3 per year) source: EuropePMC
Journal of the American Academy of Dermatology, Volume 82, Issue 2, 3 1 2019, Pages 366-376 Evaluating patients' unmet needs in hidradenitis suppurativa: Results from the Global Survey Of Impact and Healthcare Needs (VOICE) Project. Garg A, Neuren E, Cha D, Kirby JS, Ingram JR, Jemec GBE, Esmann S, Thorlacius L, Villumsen B, Marmol VD, Nassif A, Delage M, Tzellos T, Moseng D, Grimstad Ø, Naik H, Micheletti R, Guilbault S, Miller AP, Hamzavi I, van der Zee H, Prens E, Kappe N, Ardon C, Kirby B, Hughes R, Zouboulis CC, Nikolakis G, Bechara FG, Matusiak L, Szepietowski J, Glowaczewska A, Smith SD, Goldfarb N, Daveluy S, Avgoustou C, Giamarellos-Bourboulis E, Cohen S, Soliman Y, Brant EG, Akilov O, Sayed C, Tan J, Alavi A, Lowes MA, Pascual JC, Riad H, Fisher S, Cohen A, Paek SY, Resnik B, Ju Q, Wang L, Strunk A
Background: A needs assessment for patients with hidradenitis suppurativa (HS) will support advancements in multidisciplinary care, treatment, research, advocacy, and philanthropy. Objective: To evaluate unmet needs from the perspective of HS patients. Methods: Prospective multinational survey of patients between October 2017 and July 2018. Results: Before receiving a formal HS diagnosis, 63.7% (n = 827) of patients visited a physician ≥5 times. Mean delay in diagnosis was 10.2 ± 8.9 years. Pati... Abstract