Topic 13.1. Overview of family planning and pregnancy issues in Friedreich ataxia

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This chapter of the Clinical Management Guidelines for Friedreich Ataxia and the recommendations and best practice statements contained herein were endorsed by the authors and the Friedreich Ataxia Guidelines Panel in 2022.

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Disclaimer
The Clinical Management Guidelines for Friedreich ataxia (‘Guidelines’) are protected by copyright owned by the authors who contributed to their development or said authors’ assignees.

These Guidelines are systematically developed evidence statements incorporating data from a comprehensive literature review of the most recent studies available (up to the Guidelines submission date) and reviewed according to the Grading of Recommendations, Assessment Development and Evaluations (GRADE) framework © The Grade Working Group.

Guidelines users must seek out the most recent information that might supersede the diagnostic and treatment recommendations contained within these Guidelines and consider local variations in clinical settings, funding and resources that may impact on the implementation of the recommendations set out in these Guidelines.

The authors of these Guidelines disclaim all liability for the accuracy or completeness of the Guidelines, and disclaim all warranties, express or implied to their incorrect use.

Intended Use
These Guidelines are made available as general information only and do not constitute medical advice. These Guidelines are intended to assist qualified healthcare professionals make informed treatment decisions about the care of individuals with Friedreich ataxia. They are not intended as a sole source of guidance in managing issues related to Friedreich ataxia. Rather, they are designed to assist clinicians by providing an evidence-based framework for decision-making.

These Guidelines are not intended to replace clinical judgment and other approaches to diagnosing and managing problems associated with Friedreich ataxia which may be appropriate in specific circumstances. Ultimately, healthcare professionals must make their own treatment decisions on a case-by-case basis, after consultation with their patients, using their clinical judgment, knowledge and expertise.
Guidelines users must not edit or modify the Guidelines in any way – including removing any branding, acknowledgement, authorship or copyright notice.

Funding
The authors of this document gratefully acknowledge the support of the Friedreich Ataxia Research Alliance (FARA). The views and opinions expressed in the Guidelines are solely those of the authors and do not necessarily reflect the official policy or position of FARA.


13.1 Overview of family planning and pregnancy issues in Friedreich ataxia

Lisa Friedman, Kimberly Schadt and David Lynch are acknowledged for much of the content of this chapter, taken from the previous version of the guidelines (2014).

With medical advances such as improved cardiac care and other medical interventions, the average life expectancy of individuals with Friedreich ataxia (FRDA) has significantly improved beyond the previously reported age of 37 years. As such, many females with FRDA are considering family planning and pregnancy. In a study by Friedman and colleagues (1), 52.4% of women said FRDA had a huge or moderate impact on their decision to get pregnant and 52.6% of women were concerned or extremely concerned about a shortened life expectancy because of FRDA. Many of the mothers in the study had to make special accommodations for their baby, such as buying wheelchair-accessible cribs. The majority of women felt that their children benefited from having a mother with a physical disability, saying their children were “more sensitive and caring towards the needs of others.”

This chapter provides specific guidance for practitioners caring for individuals with FRDA making this important decision. The 2014 guidelines were largely based on a retrospective study and several case reports of pregnancies in women with FRDA (1-5).

Lisa Friedman, Kimberly Schadt and David Lynch are acknowledged for much of the content of this chapter, taken from the previous version of the guidelines (2014).
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9. American College of Obstetricians and Gynecologists. ACOG Practice Bulletin. Assessment of risk factors for preterm birth. Clinical management guidelines for obstetrician-gynecologists. Number 31, October 2001. (Replaces Technical Bulletin number 206, June 1995; Committee Opinion number 172, May 1996; Committee Opinion number 187, September 1997; Committee Opinion number 198, February 1998; and Committee Opinion number 251, January 2001). . Obstet Gynecol. 2001;98(4):709-16.

10. International Association of Diabetes and Pregnancy Study Groups Consensus Panel, Metzger BE, Gabbe SG, Persson B, Buchanan TA, Catalano PA, et al. International association of diabetes and pregnancy study groups recommendations on the diagnosis and classification of hyperglycemia in pregnancy. Diabetes Care. 2010;33(3):676-82.

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18. Miyasaki JM, Aldakheel A. Movement disorders in pregnancy. Continuum (Minneap Minn). 2014;20(1 Neurology of Pregnancy):148-61.

19. The Royal Australian and New Zealand College of Obstetricians and Gynaecologists. Intrapartum fetal surveillance. Clinical guidelines – fourth edition. www.ranzcog.edu.au: RANZCOG; 2019.

These Guidelines are systematically developed evidence statements incorporating data from a comprehensive literature review of the most recent studies available (up to the Guidelines submission date) and reviewed according to the Grading of Recommendations, Assessment Development and Evaluations (GRADE) framework © The Grade Working Group.

This chapter of the Clinical Management Guidelines for Friedreich Ataxia and the recommendations and best practice statements contained herein were endorsed by the authors and the Friedreich Ataxia Guidelines Panel in 2022.

It is our expectation that going forward individual topics can be updated in real-time in response to new evidence versus a re-evaluation and update of all topics simultaneously.