Shifting focus from ideality to reality: a qualitative study on how quality of life is defined by premanifest and manifest Huntington's disease gene expansion carriers.

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Title: Shifting focus from ideality to reality: a qualitative study on how quality of life is defined by premanifest and manifest Huntington's disease gene expansion carriers.
Authors: van Lonkhuizen, Pearl J. C.1,2,3 (AUTHOR) p.j.c.van_lonkhuizen@lumc.nl, Heemskerk, Anne-Wil1,3 (AUTHOR), Slutter, Leanne1 (AUTHOR), van Duijn, Erik1,3 (AUTHOR), de Bot, Susanne T.4 (AUTHOR), Chavannes, Niels H.1,2 (AUTHOR), Meijer, Eline1,2 (AUTHOR), on behalf of the HEALTHE-RND consortium (AUTHOR), Vegt, Niko (AUTHOR), Chavannes, Niels (AUTHOR), Heemskerk, Anne- Wil (AUTHOR), Feleus, Stephanie (AUTHOR), Arendts, Esther C (AUTHOR), Putman, Amy (AUTHOR), Landwehrmeyer, G. Bernhard (AUTHOR), Mühlbäck, Alzbeta (AUTHOR), Frank, Wiebke (AUTHOR), Steck, Franziska (AUTHOR), Klempíř, Jiří (AUTHOR), Konvalinková, Romama (AUTHOR)
Source: Orphanet Journal of Rare Diseases. 11/29/2024, Vol. 19 Issue 1, p1-15. 15p.
Database: Academic Search Ultimate
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Description
ISSN:17501172
DOI:10.1186/s13023-024-03461-x