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Enhancing education and communication, along with standardized care are critical to improving reproductive health management in patients with rare diseases.
The European Reference Network (ERN) Transversal Working Group has unveiled the results of a comprehensive survey addressing the unique challenges and unmet needs surrounding gestation and family planning in patients with scarce and atypical disorders.
The primary goal of the survey by Dina Zucchi and colleagues was to recognize the key challenges and effective practices related to pregnancy and family planning in rare disease management. The survey, co-designed by clinicians and patient representatives from 20 ERNs, delved into seven critical domains:
To gather comprehensive insights, both closed and open-ended questions were included, focusing on the importance of these issues, existing clinical practices, challenges faced, and areas for improvement. The survey was disseminated across various ERNs and learned societies, collecting valuable input from 197 responses across 24 countries.
The survey revealed several essential unmet needs in the care of patients with rare diseases, mainly in the realm of pregnancy and family planning. Particularly, respondents highlighted:
Moreover, respondents emphasized the importance of expanding educational activities for both healthcare providers and patients, underscoring the need for more comprehensive training to improve outcomes.
Orphanet Journal of Rare Diseases
Pregnancy-related issues in rare and low-prevalence diseases: results of ERN transversal working group on pregnancy and family planning survey
Dina Zucchi et al.
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