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

Author:

Jokubaitis Vilija G.12ORCID,Skibina Olga2,Alroughani Raed3ORCID,Altintas Ayse4,Butzkueven Helmut52,Eichau Sara6,Fragoso Yara7,Hellwig Kerstin8ORCID,Hughes Stella E.9,Rath Louise2,van der Walt Anneke52ORCID,Gray Orla10

Affiliation:

1. Department of Neuroscience, Central Clinical School, Monash University, Level 6, 99 Commercial Rd, Melbourne, VIC 3004, Australia

2. Department of Neurology, Alfred Health, Melbourne, VIC, Australia

3. Amiri Hospital, Kuwait City, Kuwait

4. Neurology Department, Koc University School of Medicine, Istanbul, Turkey

5. Department of Neuroscience, Central Clinical School, Monash University, Melbourne, VIC, Australia

6. Hospital Virgen Macarena, Sevilla, Andalucía, Spain

7. MS and Headache Research, Universidade Metropolitana de Santos, Sao Paulo, Brazil

8. Department of Neurology, St. Josef Hospital, Ruhr University Bochum, Bochum, Germany

9. Department of Neurology, Belfast Health and Social Care Trust, Belfast, UK

10. Department of Neurology, South Eastern Health and Social Care Trust, Dundonald, UK

Abstract

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.

Funder

National Health and Medical Research Council

Publisher

SAGE Publications

Subject

Neurology (clinical),Neurology,Pharmacology

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