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Publication Metadata only A deep breath for the mothers of dissabled children(Springer, 2016) N/A; N/A; Ocakçı, Ayşe Ferda; Faculty Member; School of Nursing; 1729N/APublication Open Access A systematic review of recent and ongoing clinical trials in patients with the neurofibromatoses(Elsevier, 2022) Bedolla, Edwin Nieblas; Armstrong, Amy E.; Hirbe, Angela C.; Acar, Simge; Undergraduate Student; School of MedicineIntroduction: the neurofibromatoses comprise three different genetic conditions causing considerable morbidity and mortality: neurofibromatosis type 1 (NF1), neurofibromatosis type 2 (NF2), and schwannomatosis (SWN). This review summarizes recent and ongoing clinical trials involving patients with neurofibromatoses to better understand the current state of clinical trial research centered around these conditions and inform areas of need. Methods: a search was conducted using the Cochrane Central Register of Controlled Trials and clinicaltrials.gov databases. Inclusion and exclusion criteria were designed to identify clinical trials focused on patients with NF1, NF2, or SWN completed in or after 2010 and in process as of December 31, 2021. Information was collected using standardized guidelines. Results: a total of 134 clinical trials were included, with 75 (56%) completed and 59 (44%) in process. For completed trials, 74% (n = 56) involved patients with NF1, and of those based on specific tumors (n = 26, 46%), the majority focused on plexiform neurofibromas (PNs) (n = 12, 46%). For ongoing trials, 79% (n = 47) involve patients with NF1, and of those based on specific tumors (n = 29, 61%), the majority are focused on PNs (n = 13, 45%). Conclusion: both recent and ongoing clinical trials have primarily focused on patients with NF1 and the treatment of PNs. This research has led to the first FDA-approved drug for NF1-PN and has changed management of these tumors, allowing for systemic therapy rather than reliance on only a surgical modality. Trials evaluating comorbid psychiatric conditions and quality of life among patients with any of the neurofibromatoses appear less common. These areas may warrant focus in future studies to improve clinical management.Publication Metadata only An evaluation of the knowledge and attitudes of school staff related to diabetes care at school: the 10th year of the "diabetes program at school" in Turkey(Wiley, 2021) Cemhan, Kardelen; Kurtulmus, Mehmet Fatih; Gulsen, Murat; Aycan, Zehra; Darendeliler, Feyza; Ulger, Ozlem; Bulanik, Melek; Yardim, Nazan; N/A; Gökçe, Tuğba; Muradoğlu, Serra Küpçüoğlu; Can, Ecem; Sakarya, Sibel; Yeşiltepe Mutlu, Rahime Gül; Hatun, Şükrü; Doctor; Doctor; Nurse; Faculty Member; Faculty Member; Faculty Member; N/A; N/A; N/A; School of Medicine; School of Medicine; School of Medicine; Koç University Hospital; N/A; N/A; N/A; 172028; 153511; 153504The aim of this study was to measure the knowledge and attitudes of school staff regarding care in school for children with type 1 diabetes and to evaluate the contribution of the "Diabetes Program at School"(DPS). The data were collected through an online survey consisting of 55 questions, which included 39 knowledge and 16 attitude questions. The survey was delivered to the participating school staff via a link. A total of 55,677 people who completed 100% of the survey were included. of the participants, 76% were teachers, 23% were school administrators and 0.1% were school nurses. 73% (40732) of the participants stated that they had heard about the "DPS". of the participants who were aware of the DPS 75%, 50%, and 41% stated an increase in their knowledge level, self-confidence, and awareness respectively. Both scores were positively associated with being female and school nurse, having students with diabetes in the school, having been trained in childhood diabetes, being familiar with the program and being from the Western region of Turkey. The DPS is well known among school staff including teachers, school administrators, and school nurses. However, there are clear regional differences in the knowledge and attitude of school staff regarding diabetes care at school. Therefore, regional differences should be taken into account when planning the necessary interventions to prevent any further increase in the current inequalities. In addition, increasing the number of school nurses, together with strengthening the knowledge and attitude of school staff, can improve the level of diabetes care at school.Publication Open Access Apple peel atresia with isolated fetal ascites and digit anomalies(Springer, 2019) Özlü, Can; Özen, Mehmet Ali; Gürsoy, Tuğba; Oğuzkurt, Nigar Pelin; Faculty Member; Faculty Member; Koç University Hospital; N/A; N/A; 214691; N/APublication Metadata only Application of HLA molecular mismatch algorithms to predict primary alloimmunity risk and rejection in paediatric kidney transplantation(Springer, 2023) Kim, Jon Jin; Fichtner, Alexander; Copley, Hannah; Krupka, Kai; Pape, Lars; Toenshoff, Burkhard; Kosmoliaptsis, Vasilis; Süsal, Caner; Koç Üniversitesi Organ Nakli İmmünoloji Araştırma Mükemmeliyet Merkezi (TIREX) / Transplant Immunology Research Centre of Excellence (TIREX); School of Medicine; Koç University Hospital[No abstract available]Publication Metadata only Are mechanical and chemical trauma the reason of meatal stenosis after newborn circumcision?(Springer, 2019) N/A; N/A; Özen, Mehmet Ali; Gündoğdu, Gökhan; Taşdemir, Mehmet; Eroğlu, Egemen; Faculty Member; Researcher; Faculty Member; Faculty Member; School of Medicine; School of Medicine; School of Medicine; School of Medicine; Koç University Hospital; Koç University Hospital; Koç University Hospital; Koç University Hospital; 293404; N/A; 175867; 214688Mechanical and chemical trauma are a widely accepted theories to explain the pathogenesis of meatalstenosis after newborn circumcision. The aim of the present study was to explore the theory that an exposed glans is prone to meatal stenosis. This was done by a novel investigation of boys who were born with hooded prepuce, a condition in which the glans is completely exposed. Physical examination, lower urinary tract symptoms, urethral meatus configuration, and surgical procedures of 18 children admitted for routine circumcision, who had congenital hooded prepuce with normally located urethral meatus, were analyzed. The study period was 2013 and 2018. All the cases have been seen because of neonatal circumcision request, but was postponed due to hooded prepuce. The only presenting complaint in children was a cosmetically unattractive appearance. There were no symptoms associated with meatal stenosis, they circumcised in an average of 6 years and non of them required any additional procedure.Conclusion: Meatal stenosis did not occur in cases whose glans penis are naked with hooded prepuce. These findings do not support the default chemical and mechanical trauma theories. Hooded prepuce without any penile anomalies is only a cosmetically unattractive appearance and circumcision can correct this.Publication Metadata only Assessment of HLA incompatibility at the molecular compared to antigenic HLA level enables better prediction of graft function deterioration in paediatric kidney transplantation(Springer, 2023) Kim, Jon Jin; Fichtner, Alexander; Copley, Hannah; Susal, Caner; Krupka, Kai; Pape, Lars; Burkhard, Toenshoff; Kosmoliaptsis, Vasilis; Süsal, Caner; Koç Üniversitesi Organ Nakli İmmünoloji Araştırma Mükemmeliyet Merkezi (TIREX) / Transplant Immunology Research Centre of Excellence (TIREX); School of Medicine; Koç University Hospital[No abstract available]Publication Metadata only Association between oxidative stress, genetic factors, and clinical severity in children with sickle cell anemia(Elsevier, 2018) Renoux, Celine; Joly, Philippe; Faes, Camille; Mury, Pauline; Bertrand, Yves; Garnier, Nathalie; Cuzzubbo, Daniela; Gauthier, Alexandra; Romana, Marc; Mockesch, Berenike; Cannas, Giovanna; Antoine-Jonville, Sophie; Pialoux, Vincent; Connes, Philippe; N/A; Eğlenen, Buse; Turkay, Mine; Yavaş, Gökçe; Yalçın, Özlem; Undergraduate Student; Undergraduate Student; Undergraduate Student; Faculty Member; School of Medicine; School of Medicine; School of Medicine; School of Medicine; N/A; N/A; N/A; 218440Objectives: to investigate the associations between several sickle cell disease genetic modifiers (beta-globin haplotypes, alpha-thalassemia, and glucose-6-phosphate dehydrogenase deficiency) and the level of oxidative stress and to evaluate the association between oxidative stress and the rates of vaso-occlusive events. Study design: steady-state oxidative and nitrosative stress markers, biological variables, genetic modulators, and vaso-occlusive crisis events requiring emergency admissions were measured during a 2-year period in 62 children with sickle cell anemia (58 SS and 4 S beta degrees 0). Twelve ethnic-matched children without sickle cell anemia also participated as healthy controls (AA) for oxidative and nitrosative stress level measurement. Results: oxidative and nitrosative stress were greater in patients with sickle cell anemia compared with control patients, but the rate of vaso-occlusive crisis events in sickle cell anemia was not associated with the level of oxidative stress. The presence of alpha-thalassemia, but not glucose-6-phosphate dehydrogenase deficiency or beta-globin haplotype, modulated the level of oxidative stress in children with sickle cell anemia. Conclusion Mild hemolysis in children with alpha-thalassemia may limit oxidative stress and could explain the protective role of alpha-thalassemia in hemolysis-related sickle cell complications.Publication Metadata only Basal serum tryptase is not a risk factor for immediate-type drug hypersensitivity during childhood(Wiley, 2016) Cavkaytar, Özlem; Karaatmaca, Betül; Yılmaz, Ebru Arık; Şahiner, Ümit Murat; Sekerel, Bülent Enis; Soyer, Özge; N/A; Saçkesen, Cansın; Faculty Member; School of Medicine; 182537Background: High serum basal tryptase (sBT) levels have been identified as a risk factor for both venom-and food-induced severe allergic reactions. The aim of this study was to compare sBT levels in children with different severity of actual drug hypersensitivity reactions (DHRs) with those of age-and sex-matched controls without any history of DHRs. Method: Patients between 0 and 18 years of age with a history of immediate-type DHRs manifested in 0-6 h after the culprit drug intake were included. Following ENDA (European Network for Drug Allergy) inquiries, patients were evaluated with skin and/or provocation tests to define the actual drug-hypersensitive patients. Serum BT levels were determined for both patients and controls. Results: of 345 children, 106 patients (30.7%) [(58.5% male), median age (interquartile range) 8.0 years (4.2-12.2)] were diagnosed as drug hypersensitive. Ninety-eight controls were also included. The sBT levels of drug-hypersensitive patients with and without anaphylaxis and the control group were similar [2.6 (2.0-3.6) lg/l vs. 2.8 (1.6-4.3) lg/l vs. 2.6 (1.8-3.6) lg/l, respectively, (p > 0.05)]. The sBT levels of the patients with sole cutaneous symptoms 2.8 (1.6-4.3) lg/l, mild anaphylaxis 3.0 (1.9-4.9) lg/l, and moderate-to-severe anaphylaxis 2.6 (2.0-3.6) lg/l were also comparable (p > 0.05). The onset of DHRs [those occurring in 1 h (n = 87) or in 1-6 h (n = 19) after the drug intake], positive results with skin tests with the culprit drug, or the classification of the patients according to different age groups [(0-2 years), (2-6 years), (6-12 years), (12-18 years)] did not correlate with sBT levels. Conclusion: The sBT levels in children with actual drug hypersensitivity would not be a risk factor for severe systemic reactions on the contrary to children with allergic reactions to food or insect venom.Publication Metadata only Bereavement experiences of mothers after the death of a child with cancer: is a new beginning possible?(Wiley, 2022) Aydın, Ayfer; Bingöl, Hülya; Kebudi, Rejin; Koç, Sayime Başak; Büyükkapı, Sema Bay; Yıldırım, Ülkü Miray; Zülfikar, Bülent; Umaç, Eyşan Hanzade; PhD Student; Graduate School of Health Sciences; N/AN/A