Publications 2025

Rustad CF, Bragadottir R, Nordgarden H, Miller JUU, Weedon-Fekjær MS, Arfa S, Åsten PM, Tveten K, von der Lippe C, Sigurdardottir S (2025)
Healthcare needs, care use and health status outcomes in adults with Bardet-Biedl syndrome: a cross-sectional study in Norway
BMJ Open, 15 (4), e095986
DOI 10.1136/bmjopen-2024-095986, PubMed 40262952

Rustad CF, Bragadottir R, Tveten K, Nordgarden H, Miller JU, Åsten PM, Vasconcelos G, Kulseth MA, Holla ØL, Olsen HG, von der Lippe C, Sigurdardottir S (2025)
Clinical and genetic aspects of Bardet-Biedl syndrome in adults in Norway
Orphanet J Rare Dis, 20 (1), 127
DOI 10.1186/s13023-025-03641-3, PubMed 40087798

Ullmann Miller J, Fauske L, Sigurdardottir S, Arfa S, von der Lippe C (2025)
'In the dark': parents' lifelong commitment to supporting children with Bardet-Biedl syndrome
Health Psychol Behav Med, 13 (1), 2467432
DOI 10.1080/21642850.2025.2467432, PubMed 39968158

Publications 2023

Landsend ECS, von der Lippe C, Mediå L, Miller JU, Berge KE, Sigurdardottir S (2023)
Relationship between physical and psychological functioning and health-related quality of life in congenital Aniridia
Acta Ophthalmol, 102 (5), 590-599
DOI 10.1111/aos.16615, PubMed 38131258

Sigurdardottir S, von der Lippe C, Media L, Ullmann Miller J, Landsend ECS (2023)
Self-reported symptoms of everyday executive dysfunction, daytime sleepiness, and fatigue and health status among adults with congenital aniridia: a descriptive study
Health Psychol Behav Med, 11 (1), 2263534
DOI 10.1080/21642850.2023.2263534, PubMed 37811316

Publications 2022

Millgård M, Feragen KB, Ullmann Miller J, Arfa S, Williamson H, Kling J (2022)
Adolescents and parents' perception of Young Person's Face IT: An online intervention for adolescents struggling with conditions affecting their appearance
Digit Health, 8, 20552076221147110
DOI 10.1177/20552076221147110, PubMed 36601286

Publications 2021

Grimstvedt TN, Miller JU, van Walsem MR, Feragen KJB (2021)
Speech and language difficulties in Huntington's disease: A qualitative study of patients' and professional caregivers' experiences
Int J Lang Commun Disord, 56 (2), 330-345
DOI 10.1111/1460-6984.12604, PubMed 33577706