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The MSBase pregnancy, neonatal outcomes, and women’s health registry
BACKGROUND: Family planning and pregnancy decisions are key considerations in the management of women with multiple sclerosis (MS), who are typically diagnosed between the ages of 20–40 years. Despite a strong evidence base that pregnancy is not harmful for women with MS, many knowledge gaps remain....
Autores principales: | , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
SAGE Publications
2021
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8047930/ https://www.ncbi.nlm.nih.gov/pubmed/33912245 http://dx.doi.org/10.1177/17562864211009104 |
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author | Jokubaitis, Vilija G. Skibina, Olga Alroughani, Raed Altintas, Ayse Butzkueven, Helmut Eichau, Sara Fragoso, Yara Hellwig, Kerstin Hughes, Stella E. Rath, Louise van der Walt, Anneke Gray, Orla |
author_facet | Jokubaitis, Vilija G. Skibina, Olga Alroughani, Raed Altintas, Ayse Butzkueven, Helmut Eichau, Sara Fragoso, Yara Hellwig, Kerstin Hughes, Stella E. Rath, Louise van der Walt, Anneke Gray, Orla |
author_sort | Jokubaitis, Vilija G. |
collection | PubMed |
description | BACKGROUND: Family planning and pregnancy decisions are key considerations in the management of women with multiple sclerosis (MS), who are typically diagnosed between the ages of 20–40 years. Despite a strong evidence base that pregnancy is not harmful for women with MS, many knowledge gaps remain. These include: best management strategies through pregnancy in the era of highly effective disease-modifying therapies (DMT); foetal risks associated with DMT exposure in utero or in relation to breastfeeding; knowledge base around the use of assisted reproductive technologies; the long-term impact of pregnancy on disease outcomes, as well as the impact of long-term DMT use on women’s health and cancer risk. METHODS: Here, we describe the new MSBase pregnancy, neonatal outcomes and women’s health registry. We provide the rationale for, and detailed description of, the variables collected within the registry, together with data acquisition details. CONCLUSION: The present paper will act as a reference document for future studies. |
format | Online Article Text |
id | pubmed-8047930 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | SAGE Publications |
record_format | MEDLINE/PubMed |
spelling | pubmed-80479302021-04-27 The MSBase pregnancy, neonatal outcomes, and women’s health registry Jokubaitis, Vilija G. Skibina, Olga Alroughani, Raed Altintas, Ayse Butzkueven, Helmut Eichau, Sara Fragoso, Yara Hellwig, Kerstin Hughes, Stella E. Rath, Louise van der Walt, Anneke Gray, Orla Ther Adv Neurol Disord Study Protocol BACKGROUND: Family planning and pregnancy decisions are key considerations in the management of women with multiple sclerosis (MS), who are typically diagnosed between the ages of 20–40 years. Despite a strong evidence base that pregnancy is not harmful for women with MS, many knowledge gaps remain. These include: best management strategies through pregnancy in the era of highly effective disease-modifying therapies (DMT); foetal risks associated with DMT exposure in utero or in relation to breastfeeding; knowledge base around the use of assisted reproductive technologies; the long-term impact of pregnancy on disease outcomes, as well as the impact of long-term DMT use on women’s health and cancer risk. METHODS: Here, we describe the new MSBase pregnancy, neonatal outcomes and women’s health registry. We provide the rationale for, and detailed description of, the variables collected within the registry, together with data acquisition details. CONCLUSION: The present paper will act as a reference document for future studies. SAGE Publications 2021-04-12 /pmc/articles/PMC8047930/ /pubmed/33912245 http://dx.doi.org/10.1177/17562864211009104 Text en © The Author(s), 2021 https://creativecommons.org/licenses/by-nc/4.0/This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage). |
spellingShingle | Study Protocol Jokubaitis, Vilija G. Skibina, Olga Alroughani, Raed Altintas, Ayse Butzkueven, Helmut Eichau, Sara Fragoso, Yara Hellwig, Kerstin Hughes, Stella E. Rath, Louise van der Walt, Anneke Gray, Orla The MSBase pregnancy, neonatal outcomes, and women’s health registry |
title | The MSBase pregnancy, neonatal outcomes, and women’s health registry |
title_full | The MSBase pregnancy, neonatal outcomes, and women’s health registry |
title_fullStr | The MSBase pregnancy, neonatal outcomes, and women’s health registry |
title_full_unstemmed | The MSBase pregnancy, neonatal outcomes, and women’s health registry |
title_short | The MSBase pregnancy, neonatal outcomes, and women’s health registry |
title_sort | msbase pregnancy, neonatal outcomes, and women’s health registry |
topic | Study Protocol |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8047930/ https://www.ncbi.nlm.nih.gov/pubmed/33912245 http://dx.doi.org/10.1177/17562864211009104 |
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