Myrofora Goutaki
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View article: European Respiratory Society and American Thoracic Society guidelines for the diagnosis of Primary Ciliary Dyskinesia
European Respiratory Society and American Thoracic Society guidelines for the diagnosis of Primary Ciliary Dyskinesia Open
Primary ciliary dyskinesia (PCD) is caused by pathogenetic variants in >55 genes. PCD is associated with early-onset chronic wet cough and rhinosinusitis, laterality defects, middle ear disease, and reduced fertility. The clinical presenta…
View article: Real-world feasibility of ERS asthma diagnosis guidelines for school-aged children
Real-world feasibility of ERS asthma diagnosis guidelines for school-aged children Open
Background Clinical practice guidelines for asthma diagnosis are rarely evaluated in real-life practice. Within the Swiss Paediatric Airway Cohort (SPAC), we initiated the SPAC-asthma project to develop a standardised diagnostic approach f…
View article: How well does spirometry capture the symptom range in primary ciliary dyskinesia? – a cross-sectional national study
How well does spirometry capture the symptom range in primary ciliary dyskinesia? – a cross-sectional national study Open
Introduction Patients with primary ciliary dyskinesia (PCD) present a variety of respiratory symptoms. Spirometry, particularly forced expiratory volume in 1 s (FEV1), is the most commonly used outcome measure in clinical follow-up, howeve…
View article: Exercise-induced symptoms in young childhood cancer survivors
Exercise-induced symptoms in young childhood cancer survivors Open
Purpose Exercise-induced symptoms (EIS) are common in children and understudied in childhood cancer survivors (CCS). We assessed the prevalence of EIS in CCS and identified associated risk factors. Methods We included CCS aged 6–21 years w…
View article: French consensus statement on transition of adolescent and young adults with rare pulmonary disease from paediatric to adult care: a Delphi method study
French consensus statement on transition of adolescent and young adults with rare pulmonary disease from paediatric to adult care: a Delphi method study Open
Title French consensus statement on transition of adolescents with rare pulmonary disease from paediatric to adult healthcare Background Transition of adolescents with chronic diseases to adult care is at risk of health complications and l…
View article: Exercise-induced symptoms in young childhood cancer survivors
Exercise-induced symptoms in young childhood cancer survivors Open
Purpose Exercise-induced symptoms (EIS) are common in children and understudied in childhood cancer survivors (CCS). We assessed the prevalence of EIS in CCS and identified associated risk factors. Methods We included children aged 6-20 ye…
View article: ‘Nobody Has Ever Spoken to Me About PCD and Fertility Issues’: Fertility Experiences of People With Primary Ciliary Dyskinesia and Their Family Caregivers
‘Nobody Has Ever Spoken to Me About PCD and Fertility Issues’: Fertility Experiences of People With Primary Ciliary Dyskinesia and Their Family Caregivers Open
Background Primary ciliary dyskinesia (PCD) affects fertility in both females and males. To understand the impact and concerns among people with PCD and parents of affected children (family caregivers), we explored how they report their ex…
View article: Patients' research priorities and participation in primary ciliary dyskinesia research
Patients' research priorities and participation in primary ciliary dyskinesia research Open
Introduction: People living with chronic diseases can provide a unique perspective for research that often differs from that of healthcare professionals. This is particularly important in rare diseases like primary ciliary dyskinesia (PCD)…
View article: “Nobody has ever spoken to me about PCD and fertility issues”: Fertility experiences of people with primary ciliary dyskinesia and their family caregivers
“Nobody has ever spoken to me about PCD and fertility issues”: Fertility experiences of people with primary ciliary dyskinesia and their family caregivers Open
Background Primary ciliary dyskinesia (PCD) affects fertility in both women and men. To understand the impact and concerns among people with PCD and parents of affected children (family caregivers), we explored how they report their experi…
View article: Incidence and predictors of pulmonary exacerbations in primary ciliary dyskinesia: an international prospective cohort study
Incidence and predictors of pulmonary exacerbations in primary ciliary dyskinesia: an international prospective cohort study Open
Introduction Pulmonary exacerbations contribute to disease progression in chronic lung diseases. In a large prospective cohort study, we studied the incidence and predictors of pulmonary exacerbations among persons with primary ciliary dys…
View article: Definition of sinonasal and otological exacerbation in patients with primary ciliary dyskinesia: an expert consensus
Definition of sinonasal and otological exacerbation in patients with primary ciliary dyskinesia: an expert consensus Open
Background Recurrent infections of the nose, sinuses and ears are common problems for people with primary ciliary dyskinesia. While pulmonary exacerbations in primary ciliary dyskinesia are defined, there is no definition for ear-nose-thro…
View article: Priorities and barriers for research related to primary ciliary dyskinesia
Priorities and barriers for research related to primary ciliary dyskinesia Open
Background Despite advances in primary ciliary dyskinesia (PCD) research, many questions remain; diagnosis is complex and no disease-specific therapies exist. Using a mixed-methods approach, we aimed to identify priorities for clinical and…
View article: Questionnaire-assessed genotypes and associations with symptoms in primary ciliary dyskinesia
Questionnaire-assessed genotypes and associations with symptoms in primary ciliary dyskinesia Open
Collecting genetic information by questionnaire from people with PCD is feasible. This study confirmed typical differences in laterality defects and age at diagnosis between genotypes but found that symptoms were equally common across g…
View article: Infertility and pregnancy outcomes among adults with primary ciliary dyskinesia
Infertility and pregnancy outcomes among adults with primary ciliary dyskinesia Open
Study question What is the prevalence of infertility and ectopic pregnancies among individuals with primary ciliary dyskinesia (PCD), to what extent do they benefit from medically assisted reproduction (MAR), and how does fertility differ …
View article: Definition of sinonasal and otologic exacerbation in patients with primary ciliary dyskinesia - an expert consensus
Definition of sinonasal and otologic exacerbation in patients with primary ciliary dyskinesia - an expert consensus Open
Background Recurrent infections of the nose, sinuses, and ears are common problems for people with primary ciliary dyskinesia (PCD). While pulmonary exacerbations in PCD are defined, there is no definition for Ear-Nose-Throat (ENT) exacerb…
View article: Recommendations for surveillance of pulmonary dysfunction among childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group
Recommendations for surveillance of pulmonary dysfunction among childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group Open
View article: Association between upper and lower respiratory disease among patients with primary ciliary dyskinesia: an international study
Association between upper and lower respiratory disease among patients with primary ciliary dyskinesia: an international study Open
Introduction Nearly all patients with primary ciliary dyskinesia (PCD) report ear–nose–throat (ENT) symptoms. However, scarce evidence exists about how ENT symptoms relate to pulmonary disease in PCD. We explored possible associations betw…
View article: Priorities and barriers for research related to primary ciliary dyskinesia
Priorities and barriers for research related to primary ciliary dyskinesia Open
Background Despite advances in primary ciliary dyskinesia (PCD) research, many questions remain; diagnosis is complex and no disease specific therapies exist. Using a mixed-methods approach, we aimed to identify priorities for clinical and…
View article: Infertility and pregnancy outcomes among adults with primary ciliary dyskinesia
Infertility and pregnancy outcomes among adults with primary ciliary dyskinesia Open
STUDY QUESTION What is the prevalence of infertility and ectopic pregnancies among individuals with primary ciliary dyskinesia (PCD)? SUMMARY ANSWER We found that 39 of 50 men (78%) and 72 of 118 women (61%) with PCD were infertile and tha…
View article: ERS International Congress 2023: highlights from the Paediatrics Assembly
ERS International Congress 2023: highlights from the Paediatrics Assembly Open
Respiratory health in children is essential for general wellbeing and healthy development in the short and long term. It is well known that many respiratory diseases in adulthood have their origins in early life, and therefore research on …
View article: Genotypes and associations with symptoms in primary ciliary dyskinesia
Genotypes and associations with symptoms in primary ciliary dyskinesia Open
Background Knowledge about genotype-phenotype associations is crucial for understanding the clinical variability of primary ciliary dyskinesia (PCD). We studied how feasible it is to collect information about causative genes directly from …
View article: Lack of Correlation of Sinonasal and Otologic Reported Symptoms With Objective Measurements Among Patients With Primary Ciliary Dyskinesia: An International Study
Lack of Correlation of Sinonasal and Otologic Reported Symptoms With Objective Measurements Among Patients With Primary Ciliary Dyskinesia: An International Study Open
Lack of Correlation of Sinonasal and Otologic Reported Symptoms With Objective Measurements Among Patients With Primary Ciliary Dyskinesia: An International Study
View article: A BEAT-PCD consensus statement: a core outcome set for pulmonary disease interventions in primary ciliary dyskinesia
A BEAT-PCD consensus statement: a core outcome set for pulmonary disease interventions in primary ciliary dyskinesia Open
Background Consistent use of reliable and clinically appropriate outcome measures is a priority for clinical trials, with clear definitions to allow comparability. We aimed to develop a core outcome set (COS) for pulmonary disease interven…
View article: SARS-CoV-2 variants of concern in children and adolescents with COVID-19: a systematic review
SARS-CoV-2 variants of concern in children and adolescents with COVID-19: a systematic review Open
Objectives Infections by SARS-CoV-2 variants of concern (VOCs) might affect children and adolescents differently than earlier viral lineages. We aimed to address five questions about SARS-CoV-2 VOC infections in children and adolescents: (…
View article: Association between upper and lower respiratory disease among patients with primary ciliary dyskinesia: an international study
Association between upper and lower respiratory disease among patients with primary ciliary dyskinesia: an international study Open
Introduction Nearly all patients with primary ciliary dyskinesia (PCD) report ear-nose-throat (ENT) symptoms. However, scarce evidence exists about how ENT symptoms relate to pulmonary disease in PCD. We explored possible associations betw…
View article: Evaluation of the Double-Tracer Gas Single-Breath Washout Test in a Pediatric Field Study
Evaluation of the Double-Tracer Gas Single-Breath Washout Test in a Pediatric Field Study Open
View article: Diagnostic testing in people with primary ciliary dyskinesia: An international participatory study
Diagnostic testing in people with primary ciliary dyskinesia: An international participatory study Open
Diagnostic tests are important in primary ciliary dyskinesia (PCD), a rare disease, to confirm the diagnosis and characterize the disease. We compared diagnostic tests for PCD between countries worldwide, assessed whether people with PCD r…
View article: Recommendations for surveillance of pulmonary dysfunction among childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group
Recommendations for surveillance of pulmonary dysfunction among childhood, adolescent, and young adult cancer survivors: a report from the International Late Effects of Childhood Cancer Guideline Harmonization Group Open
Childhood, adolescent, and young adult (CAYA) cancer survivors are at risk of pulmonary dysfunction. Current follow-up care guidelines are discordant. Therefore, the International Late Effects of Childhood Cancer Guideline Harmonization Gr…
View article: Incidence and Severity of SARS-CoV-2 Infections in People With Primary Ciliary Dyskinesia
Incidence and Severity of SARS-CoV-2 Infections in People With Primary Ciliary Dyskinesia Open
Objectives: There is little data on SARS-CoV-2 in people with rare chronic diseases. We studied incidence and severity of SARS-CoV-2 and its risk factors in people with primary ciliary dyskinesia (PCD) from May 2020 to May 2022. Methods: W…
View article: Ear and upper airway clinical outcome measures for use in primary ciliary dyskinesia research: a scoping review
Ear and upper airway clinical outcome measures for use in primary ciliary dyskinesia research: a scoping review Open
Background Primary ciliary dyskinesia (PCD) is a rare genetic disorder characterised by pulmonary, otological and sino-nasal manifestations. Well-defined clinical outcome measures are needed in such rare diseases research to improve follow…