20.500.12556/DiRROS-28388 Academic productivity from rare neuromuscular disease registries a systematic review Background: TREAT-NMD is a global neuromuscular (NM) organization, created to enhance infrastructure to facilitate novel therapeutics reaching patients. One main activity is aimed at supporting NM disease registries. These rare disease registries are useful to fill knowledge gaps for various stakeholders in the disease community using real world data. Although it is important to understand how patient data is being utilized in the TREAT-NMD network and other rare disease registries, there is no systematic process or consistent metric for documenting the academic output from these registries. Objectives: The objective of this study was to determine the academic output from NM registries associated with the TREAT-NMD network, and the types of research the data is facilitating. Results: A systematic search of EMBASE, Medline, Cochrane Central and SCOPUS was performed from inception to November 24, 2021. The search yielded a total of 650 results, with 231 full text studies assessed for eligibility and a total of 97 studies that met the inclusion criteria. Conclusions: The results suggest publications from TREAT-NMD are mainly descriptive or methodologic. Rare disease registries, like the TREAT-NMD network, would benefit from clear and consistent metrics to facilitate reporting of academic output. academic productivity neuromuscular disease registry akademska produktivnost nevromišične bolezni register true false true Angleški jezik Slovenski jezik Neznano 2026-03-17 11:26:40 2026-03-17 11:26:41 2026-03-24 03:55:36 0000-00-00 00:00:00 2022 0 0 Nasl. z nasl. zaslona; Opis vira z dne 17. 3. 2026; str. 5-15 issue 2 Vol. 7 2022 0000-00-00 Zaloznikova Objavljeno NiDoloceno 0000-00-00 0000-00-00 0000-00-00 616.8 2572-9411 10.29245/2572-9411/2022/2.1204 271938819 RAZ_Nguyen_Tran_M_2022.pdf RAZ_Nguyen_Tran_M_2022.pdf 1 BD4B6315A8E48D21275D6CF6BE9E7DB7 b33c836f236f807aa2ff9d62541935f8806df8103f97f4a597987010638f7631 ee0a842f-21eb-11f1-84b6-001a4af901a5 https://dirros.openscience.si/Dokument.php?lang=slv&id=41981 https://www.rarediseasesjournal.com/articles/academic-productivity-from-rare-neuromuscular-disease-registries-a-systematic-review.html 1 ccc2514f-21eb-11f1-84b6-001a4af901a5 https://dirros.openscience.si/Dokument.php?lang=slv&id=41980 Univerzitetni klinični center Ljubljana 0 0 0