Publications by authors named "E de Vroom"
Article Synopsis
- A collaboration of clinicians, researchers, and family groups worked from March 2021 to March 2024 to improve tools for assessing brain involvement in Duchenne and Becker Muscular Dystrophies.
- They reached a consensus on which screening questionnaires and clinical assessments are most effective for understanding neurocognitive and neurobehavioral issues in these conditions.
- The gathered data will also help study connections between brain comorbidities, dystrophin isoforms, brain imaging, and animal models lacking these isoforms.
Article Synopsis
- Duchenne and Becker muscular dystrophy currently have no cure, but the Dutch Dystrophinopathy Database (DDD) aims to facilitate therapy development by gathering comprehensive and reusable data from affected patients.
- DDD allows for online enrollment and participation at varying levels, collecting important clinical and self-reported data while maintaining a governance structure for effective management and oversight.
- As of November 1, 2023, the database has 742 enrolled participants, enabling the identification of potential candidates for clinical studies and supporting ongoing research in the field.
Background: The EURO-NMD Registry collects data from all neuromuscular patients seen at EURO-NMD's expert centres. In-kind contributions from three patient organisations have ensured that the registry is patient-centred, meaningful, and impactful. The consenting process covers other uses, such as research, cohort finding and trial readiness.
View Article and Find Full Text PDFJustice-involved adolescents (JIAs) have an increased risk for opioid use disorder and overdose related to opioid misuse (OM). Consequences of untreated OM include recidivism and poor educational outcomes, which can be harsher for female JIA. Therefore, identifying relevant factors and settings that reduce the risk for OM is critical.
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