Arthrogryposis Multiplex Congenita (AMC) and counselling before and during pregnancy: a questionnaire study
This study provides unique insights from women with AMC regarding pregnancy and parenthood. Participants emphasized the importance of tailored care. Their preferences strongly advocate for implementing pre-pregnancy counselling from the age of 18, ideally by a multidisciplinary team including a gynecologist. Incorporating these perspectives is essential to improve reproductive care.
Authors
- Femke Stoelinga
- Johanna I.P. de Vries (ORCID: https://orcid.org/0000-0002-1555-8045)
- Ingeborg H. Linskens (ORCID: https://orcid.org/0009-0005-1509-5182)
- Arda Arduç (ORCID: https://orcid.org/0009-0007-7157-6014)
- Bonita Sawatzky (ORCID: https://orcid.org/0000-0002-8901-2301)
- Isabel Filges (ORCID: https://orcid.org/0000-0002-2149-6354)
- Maria B. Tan-Sindhunata
- Julia Slootbeek
Institutions
- Amsterdam University College (NL)
- University of British Columbia (CA)
- University of Basel (CH)
- University Hospital of Basel (CH)
- Amsterdam Neuroscience (NL)
- Amsterdam University Medical Centers (NL)
- University of Amsterdam (NL)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2025-07-26
- DOI
- https://doi.org/10.1186/s13023-025-03913-y
- Citations
- 1
- Primary Topic
- Neurogenetic and Muscular Disorders Research
- Type
- article
- Field-Weighted Citation Impact
- 1.63