- Measuring what matters to rare disease patients – reflections on the ...🔍
- Burden of Rare Disease Study🔍
- Integration Across the Lifespan EC Full Membership Call🔍
- Advancing the Development of Therapeutics Through Rare Disease ...🔍
- Transformation of the Taiwan Biobank 3.0🔍
- Enhanced visualization of microbiome data in repeated measures ...🔍
- New £14 million investment targets rare diseases🔍
- Effectiveness analysis of a pharmacist|led intervention for ...🔍
Additional file 1 of Developing a community|led rare disease ELSI ...
Measuring what matters to rare disease patients – reflections on the ...
... Other Diseases. 2017;9(5). Available from ... 2022, Orphanet Journal of Rare Diseases, № 1 ... Developing a community-led rare disease ELSI research agenda.
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to ...
Integration Across the Lifespan EC Full Membership Call
• Capacity building to develop or enhance an ELSI research agenda, and Workforce ... by defining the presentation and course of a rare disease to enable the ...
Engaging with patient communities and other experts early in the process, and on an ongoing basis, can help all participants in drug development ...
Transformation of the Taiwan Biobank 3.0: vertical and horizontal ...
... developing a better understanding of “precision medicine” [ 1 ]. ... Additional file 1). Furthermore, there have been ... It will also accelerate disease research ...
Enhanced visualization of microbiome data in repeated measures ...
However, within the context of microbiome studies, it takes on an additional role by allowing for an understanding of microbial community structures in relation ...
Course 1, Course 2, Course 3, Course 4, Add additional courses. 3, Professional Responsibilities, 1, Recognize when one's own attitudes and values related to ...
New £14 million investment targets rare diseases - UKRI
Cardiovascular Rare Disease led by Imperial College London; UK ... Our vision for CAPTIVATE is to develop a 'one-stop-study' that ...
Effectiveness analysis of a pharmacist-led intervention for ... - Frontiers
The pharmacist-led perioperative antibiotic prophylaxis model can significantly improve the medical behavior of clinicians in choosing cephalosporin ...
Biobank Standardisation and Harmonisation for Research ... - CORDIS
... further development and research activities. ... Ethics and privacy considerations have been informed by P3G and other ELSI ... International rare disease networks ...
Personal Genomes: Accessing, Sharing, and ... - HAW-Hamburg
to the interview guide (Supplementary File 1). At ... pharmacogenetics profile, and genetic risk of developing rare ... challenges and opportunities for the Indian ...