3210 Predicting 12-month mortality in Huntington’s disease using tree-based ensemble machine learning methods
imperfect.It puts an onus on patients to monitor multiple sources for notification of new studies, meaning that people who might have enrolled in a study may not find out about it, or enrol later than they otherwise might have.Research recruitment databases have been shown to reduce this problem in other conditions.Methods We established a research recruitment database, FND Research Connect (www.fnd-research.org)where pwFND can prospectively register to be contacted about studies for which they meet inclusion criteria, and to have the information they provide for screening purposes used in an anonymised form for epidemiological research.Results On a 'soft' initial release to Australia only, 284 pwFND enrolled for the database in the first month.One study is already being prepared for publication using data from the database.Worldwide release is planned for early March 2024.
Authors
- Thanh G. Phan (ORCID: https://orcid.org/0000-0003-3400-6323)
- Yenni Lie (ORCID: https://orcid.org/0000-0002-6758-6435)
- Henry Ma (ORCID: https://orcid.org/0000-0002-0510-8059)
- Justin Jiang (ORCID: https://orcid.org/0000-0001-5206-280X)
- Susan Mathers
- Yufei Xu
Institutions
- Monash Medical Centre (AU)
- Calvary Health Care Bethlehem (AU)
- Monash Health (AU)
- Monash University (AU)
Publication Details
- Published
- 2024-08-01
- DOI
- https://doi.org/10.1136/bmjno-2024-anzan.159
- Primary Topic
- Genetic Neurodegenerative Diseases
- Type
- article
- Field-Weighted Citation Impact
- 0.00