A quality-of-life measure for adults with primary ciliary dyskinesia: QOL–PCD

JS Lucas, L Behan, AD Galvin, A Alpern… - European …, 2015 - Eur Respiratory Soc
Primary ciliary dyskinesia (PCD) is characterised by chronic suppurative lung disease, rhino-sinusitis,
hearing impairment and sub-fertility. We have developed the first multidimensional …

Primary ciliary dyskinesia: first health-related quality-of-life measures for pediatric patients

…, TW Ferkol, MR Knowles, A Alpern… - Annals of the …, 2016 - atsjournals.org
Rationale: Primary ciliary dyskinesia (PCD) is a rare disease. There are no available data
on disease-specific pediatric patient–reported outcomes. Objectives: Our objective was to …

Development of health-related quality of life instruments for young children with disorders of sex development (DSD) and their parents

AN Alpern, M Gardner, B Kogan… - Journal of Pediatric …, 2017 - academic.oup.com
Objective Research in disorders of sex development (DSD) is hindered by a lack of standardized
measures sensitive to the experiences of affected children and families. We developed …

[HTML][HTML] Clustered randomized controlled trial of a clinic-based problem-solving intervention to improve adherence in adolescents with cystic fibrosis

AL Quittner, MN Eakin, AN Alpern, AK Ridge… - Journal of Cystic …, 2019 - Elsevier
Background In Cystic Fibrosis (CF), adherence to pulmonary medications is about 50% and
decreases during adolescence. Effective interventions have not been integrated into CF care…

[HTML][HTML] Initial evaluation of the Parent Cystic Fibrosis Questionnaire—Revised (CFQ-R) in infants and young children

AN Alpern, LC Brumback, F Ratjen, M Rosenfeld… - Journal of Cystic …, 2015 - Elsevier
Background There is an urgent need to evaluate treatments for young children with cystic
fibrosis (CF); however, efforts have been hampered by a lack of reliable, practical endpoints. …

Challenges of disorders of sex development: diverse perceptions across stakeholders

BA Kogan, M Gardner, AN Alpern, LM Cohen… - Hormone Research in …, 2012 - karger.com
Background/Aims: Disorders of sex development (DSD) are congenital conditions in which
chromosomal, gonadal, or anatomic sex development is atypical. Optimal management is …

Dynamic Topic Language Model on Heterogeneous Children's Mental Health Clinical Notes

H Ye, T Moreno, A Alpern, L Ehwerhemuepha… - arXiv preprint arXiv …, 2023 - arxiv.org
Mental health diseases affect children's lives and well-beings which have received increased
attention since the COVID-19 pandemic. Analyzing psychiatric clinical notes with topic …

Development of pediatric cross-cultural patient-reported outcome measures: QOL-PCD

…, M Leigh, T Ferkol, M Knowles, A Alpern… - European …, 2014 - Eur Respiratory Soc
Primary Ciliary Dyskinesia (PCD) is a rare genetic disease characterised by bronchiectasis,
rhinosinusitis, and ear disease. We developed harmonized (North America, Europe) …

Assessing health-related quality of life in disorders of sex development: phase I–item generation

…, BA Kogan, MB Grimley, L Cohen, AN Alpern… - Hormonal and Genetic …, 2011 - Springer
Disorders of sex development (DSD) are congenital conditions in which chromosomal,
gonadal, or anatomic sex development is atypical [1]. Only anecdotal, retrospective reports exist …

Transition from paediatric to adult cystic fibrosis care: A developmental framework

AS Madan, AN Alpern, AL Quittner - Cystic Fibrosis, 2014 - books.google.com
Currently, there are no consistent procedures for transitioning adolescents from paediatric
to adult cystic fibrosis (CF) care, and little empirical evidence exists on the best practices for …