| Title: | Academic productivity from rare neuromuscular disease registries : a systematic review |
|---|
| Authors: | ID Nguyen, Tran M (Author)
ID Downs, Matt (Author)
ID Bennett, Neil (Author)
ID Matyushenko, Vitaliy (Author)
ID Nakamura, Harumasa (Author)
ID Osredkar, Damjan (Author)
ID Wu, Shiwen (Author)
ID Goemans, Nathalie (Author)
ID Ambrosini, Anna (Author)
ID El Sherifc, Rahsa (Author)
ID Campbell, Craig (Author) |
|---|
| Files: |  PDF - Presentation file, download (479,54 KB)
MD5: BD4B6315A8E48D21275D6CF6BE9E7DB7
 URL - Source URL, visit https://www.rarediseasesjournal.com/articles/academic-productivity-from-rare-neuromuscular-disease-registries-a-systematic-review.html
|
|---|
| Language: | English |
|---|
| Typology: | 1.01 - Original Scientific Article |
|---|
| Organization: |  UKC LJ - Ljubljana University Medical Centre
|
|---|
| Abstract: | 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. |
|---|
| Keywords: | academic productivity, neuromuscular disease, registry |
|---|
| Publication status: | Published |
|---|
| Publication version: | Version of Record |
|---|
| Year of publishing: | 2022 |
|---|
| Number of pages: | str. 5-15 |
|---|
| Numbering: | Vol. 7, issue 2 |
|---|
| PID: | 20.500.12556/DiRROS-28388  |
|---|
| UDC: | 616.8 |
|---|
| ISSN on article: | 2572-9411 |
|---|
| DOI: | 10.29245/2572-9411/2022/2.1204 |
|---|
| COBISS.SI-ID: | 271938819 |
|---|
| Note: | Nasl. z nasl. zaslona;
Opis vira z dne 17. 3. 2026;
|
|---|
| Publication date in DiRROS: | 17.03.2026 |
|---|
| Views: | 146 |
|---|
| Downloads: | 104 |
|---|
| Metadata: |    |
|---|
|
:
|
Copy citation |
|---|
| | | | Share: |  |
|---|
Hover the mouse pointer over a document title to show the abstract or click
on the title to get all document metadata. |
