The MSBase pregnancy, neonatal outcomes, and women's health registry

被引:7
作者
Jokubaitis, Vilija G. [1 ,2 ]
Skibina, Olga [2 ]
Alroughani, Raed [3 ]
Altintas, Ayse [4 ]
Butzkueven, Helmut [1 ,2 ]
Eichau, Sara [5 ]
Fragoso, Yara [6 ]
Hellwig, Kerstin [7 ]
Hughes, Stella E. [8 ]
Rath, Louise [2 ]
van der Walt, Anneke [1 ,2 ]
Gray, Orla [9 ]
机构
[1] Monash Univ, Cent Clin Sch, Dept Neurosci, Level 6,99 Commercial Rd, Melbourne, Vic 3004, Australia
[2] Alfred Hlth, Dept Neurol, Melbourne, Vic, Australia
[3] Amiri Hosp, Kuwait, Kuwait
[4] Koc Univ, Sch Med, Dept Neurol, Istanbul, Turkey
[5] Hosp Virgen Macarena, Seville, Andalucia, Spain
[6] Univ Metropolitana Santos, MS & Headache Res, Sao Paulo, Brazil
[7] Ruhr Univ Bochum, St Josef Hosp, Dept Neurol, Bochum, Germany
[8] Belfast Hlth & Social Care Trust, Dept Neurol, Belfast, Antrim, North Ireland
[9] South Eastern Hlth & Social Care Trust, Dept Neurol, Dundonald, North Ireland
基金
英国医学研究理事会;
关键词
Multiple Sclerosis; Women’ s Health; Pregnancy; Neonatal Outcomes; Registry; MSBase;
D O I
10.1177/17562864211009104
中图分类号
R74 [神经病学与精神病学];
学科分类号
摘要
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.
引用
收藏
页数:8
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