Anxiety and depression in Dutch patients with primary ciliary dyskinesia and their caregivers: associations with health-related quality of life

Autor: Marieke Verkleij, Iris Appelman, Josje Altenburg, Jos Twisk, Alexandra L. Quittner, Eric Haarman

Publikováno v: ERJ Open Research, Vol 7, Iss 4 (2021)

Background Primary ciliary dyskinesia (PCD) might be a risk factor for the development of anxiety and depression. This study investigated the associations between anxiety, depression and health-related quality of life (HRQoL) in individuals with PCD

Externí odkaz: https://doaj.org/article/45b66d275828445f902403d9fd3bead2

Pilot of a therapist-guided digital mental health intervention (eHealth CF-CBT) for adults with cystic fibrosis

Autor: Marieke Verkleij, Anna M. Georgiopoulos, Heleen Barendrecht, Deborah Friedman

Publikováno v: Verkleij, M, Georgiopoulos, A M, Barendrecht, H & Friedman, D 2023, ' Pilot of a therapist-guided digital mental health intervention (eHealth CF-CBT) for adults with cystic fibrosis ', Pediatric Pulmonology, vol. 58, no. 7, pp. 2094-2103 . https://doi.org/10.1002/ppul.26438
Pediatric Pulmonology. Wiley-Liss Inc.

Background: eHealth CF-CBT is the first digital mental health intervention for depression/anxiety in adults with cystic fibrosis (awCF); an 8-session therapist-guided internet-delivered program that was developed in English and Dutch with stakeholder

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::04e4049e37c348a890d753ded58d2de8
https://doi.org/10.1002/ppul.26438

National integration of mental health screening and treatment into specialized care for cystic fibrosis: What predicts success?

Autor: Alexandra L. Quittner, David Barker, Sonia Graziano, Anna M. Georgiopoulos, Emily Muther, Marieke Verkleij, Michael S. Schechter, Laura Tillman, Amy Mueller, Paula Lomas, Sarah Hempstead, Beth A. Smith

Publikováno v: Pediatric Pulmonology, 58(6), 1768-1776. Wiley-Liss Inc.
Quittner, A L, Barker, D, Graziano, S, Georgiopoulos, A M, Muther, E, Verkleij, M, Schechter, M S, Tillman, L, Mueller, A, Lomas, P, Hempstead, S & Smith, B A 2023, ' National integration of mental health screening and treatment into specialized care for cystic fibrosis : What predicts success? ', Pediatric Pulmonology, vol. 58, no. 6, pp. 1768-1776 . https://doi.org/10.1002/ppul.26400

Objectives: The CF Foundation sponsored competitive awards for Mental Health Coordinators (MHCs) from 2016-2018 to implement the international guidelines for mental health screening and treatment in US CF centers. Longitudinal surveys evaluated succe

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::2033203123eccdc850da27548b1d41ec
https://research.vumc.nl/en/publications/7cb9872e-b2ce-4d4d-a334-e79e056807e2

Biallelic variants in the SLC13A1 sulfate transporter gene cause hyposulfatemia with a mild spondylo-epi-metaphyseal dysplasia

Autor: Jiddeke M. van de Kamp, Arend Bökenkamp, Desiree E. C. Smith, Mirjam M. C. Wamelink, Erwin E. W. Jansen, Eduard A. Struys, Quinten Waisfisz, Marieke Verkleij, Michaela F. Hartmann, Rong Wang, Stefan A. Wudy, Chiara Paganini, Antonio Rossi, Martijn J. J. Finken

Publikováno v: van de Kamp, J M, Bökenkamp, A, Smith, D E C, Wamelink, M M C, Jansen, E E W, Struys, E A, Waisfisz, Q, Verkleij, M, Hartmann, M F, Wang, R, Wudy, S A, Paganini, C, Rossi, A & Finken, M J J 2023, ' Biallelic variants in the SLC13A1 sulfate transporter gene cause hyposulfatemia with a mild spondylo-epi-metaphyseal dysplasia ', Clinical Genetics, vol. 103, no. 1, pp. 45-52 . https://doi.org/10.1111/cge.14239
Clinical Genetics, 103(1), 45-52. Wiley-Blackwell

Sulfate is the fourth most abundant anion in human plasma but is not measured in clinical practice and little is known about the consequences of sulfate deficiency. Nevertheless, sulfation plays an essential role in the modulation of numerous compoun

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::38f912b4df94fea3356cb682c253b22d
https://pubmed.ncbi.nlm.nih.gov/36175384

Standards of care for CFTR variant-specific therapy (including modulators) for people with cystic fibrosis

Autor: Kevin W. Southern, Carlo Castellani, Elise Lammertyn, Alan Smyth, Donald VanDevanter, Silke van Koningsbruggen-Rietschel, Jürg Barben, Amanda Bevan, Edwin Brokaar, Sarah Collins, Gary J. Connett, Thomas W.V. Daniels, Jane Davies, Dimitri Declercq, Silvia Gartner, Andrea Gramegna, Naomi Hamilton, Jenny Hauser, Nataliya Kashirskaya, Laurence Kessler, Jacqueline Lowdon, Halyna Makukh, Clémence Martin, Lisa Morrison, Dilip Nazareth, Jacquelien Noordhoek, Ciaran O'Neill, Elizabeth Owen, Helen Oxley, Karen S. Raraigh, Caroline Raynal, Karen Robinson, Jobst Roehmel, Carsten Schwarz, Isabelle Sermet, Michal Shteinberg, Ian Sinha, Constance Takawira, Peter van Mourik, Marieke Verkleij, Michael D. Waller, Alistair Duff

Publikováno v: Journal of Cystic Fibrosis. Elsevier
Southern, K W, Castellani, C, Lammertyn, E, Smyth, A, VanDevanter, D, van Koningsbruggen-Rietschel, S, Barben, J, Bevan, A, Brokaar, E, Collins, S, Connett, G J, Daniels, T W V, Davies, J, Declercq, D, Gartner, S, Gramegna, A, Hamilton, N, Hauser, J, Kashirskaya, N, Kessler, L, Lowdon, J, Makukh, H, Martin, C, Morrison, L, Nazareth, D, Noordhoek, J, O'Neill, C, Owen, E, Oxley, H, Raraigh, K S, Raynal, C, Robinson, K, Roehmel, J, Schwarz, C, Sermet, I, Shteinberg, M, Sinha, I, Takawira, C, van Mourik, P, Verkleij, M, Waller, M D & Duff, A 2023, ' Standards of care for CFTR variant-specific therapy (including modulators) for people with cystic fibrosis ', Journal of Cystic Fibrosis, vol. 22, no. 1, pp. 17-30 . https://doi.org/10.1016/j.jcf.2022.10.002
Scientia
Southern, K W, Castellani, C, Lammertyn, E, Smyth, A, VanDevanter, D, van Koningsbruggen-Rietschel, S, Barben, J R, Bevan, A, Brokaar, E, Collins, S, Connett, G J, Daniels, T W V, Davies, J, Declercq, D, Gartner, S, Gramegna, A, Hamilton, N, Hauser, J, Kashirskaya, N, Kessler, L, Lowdon, J, Makukh, H, Martin, C, Morrison, L, Nazareth, D, Noordhoek, J, O'Neill, C, Owen, E, Oxley, H, Raraigh, K S, Raynal, C, Robinson, K, Roehmel, J, Schwarz, C, Sermet, I, Shteinberg, M, Sinha, I, Takawira, C, van Mourik, P, Verkleij, M, Waller, M D & Duff, A 2023, ' Standards of care for CFTR variant-specific therapy (including modulators) for people with cystic fibrosis ', Journal of Cystic Fibrosis, vol. 22, no. 1, pp. 17-30 . https://doi.org/10.1016/j.jcf.2022.10.002
JOURNAL OF CYSTIC FIBROSIS

Cystic fibrosis; Guidelines; Variant-specific therapy Fibrosis quística; Pautas; Terapia variante específica Fibrosi quística; Pautes; Teràpia variant específica Cystic fibrosis (CF) has entered the era of variant-specific therapy, tailored to t

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::7c6ded04c482379180be18ea1ab6cf12
https://research.vumc.nl/en/publications/6fa8f077-49b9-4675-b900-f20dc3826455