Scoping review of the recommendations and guidance for improving the quality of rare disease registries
JE Tarride, A Okoh, K Aryal, C Prada… - Orphanet Journal of …, 2024 - Springer
Abstract Background Rare disease registries (RDRs) are valuable tools for improving
clinical care and advancing research. However, they often vary qualitatively, structurally, and …
clinical care and advancing research. However, they often vary qualitatively, structurally, and …
Multi-stakeholder opinion statement on the care of individuals born with differences of sex development: common ground and opportunities for improvement
M Cools, EY Cheng, J Hall, J Alderson… - Horm Res …, 2024 - karger.com
Background: In the last 15 years, the care provided for individuals born with differences of
sex development (DSD) has evolved, with a strong emphasis on interdisciplinary …
sex development (DSD) has evolved, with a strong emphasis on interdisciplinary …