November 2024
Interview with Ana Grönke
20/11/24 13:32 Filed in: Klinikum Der Universität Zu Köln | Rheasoft
Leader of work packages 3 & 5, PhD degree in Medical Sciences. Project coordinator, Data Steward, and Research Officer at University of Cologne. Not only does Ana Grönke have significant experience in leading international multidisciplinary teams. She is also an experienced Postdoctoral Researcher with a demonstrated history of working in the research industry. This makes her a great asset to the BETTER Project!
Watch her interview to hear more about Ana Grönke’s role, her motivation and expectations for the BETTER project.
Watch her interview to hear more about Ana Grönke’s role, her motivation and expectations for the BETTER project.
Interview with Maria Jesús Arranz
15/11/24 10:12 Filed in: Fundació Docencia i Recerca Mutua de Terassa | Rheasoft
Leader of use case 3, a doctor in biology. Head of the Research Laboratory Unit at the Fundació Mútua Terrassa since 2011. Dr. Maria Jesús's work on the pharmacogenetics of antipsychotics is well known, having published leading papers on the use of pharmacogenetics for the prediction of response to antipsychotic and antidepressant treatments. Her specialisation and expertise is an important part of the BETTER Project!
Watch her interview to hear more about Maria Jesús’s role, her motivation and expectations for the BETTER project.
Watch her interview to hear more about Maria Jesús’s role, her motivation and expectations for the BETTER project.
Global Collaboration in Rare Disease Research: The Promising Future of the BETTER Project
13/11/24 10:41 Filed in: Fundació de Recerca Sant Joan de Déu - Hospital Sant Joan de Déu
Studying rare diseases presents unique and substantial challenges for the scientific community. One of the most significant obstacles is the limited number of cases available, which restricts the formation of large patient cohorts needed for meaningful and robust studies. Additionally, the limited understanding of these diseases creates diagnostic difficulties for clinicians, often leading to potential misdiagnosis or late diagnosis. This, in turn, postpones the initiation of effective treatments and hampers comprehensive research.
Many of these rare diseases have a genetic component and recent advancements in genome sequencing have been pivotal for the study of these conditions. The availability of detailed genomic data has enabled researchers to investigate the underlying causes of many rare diseases with unprecedented precision, significantly improving diagnostic accuracy. While small patient population remains as a major challenge, genomic research is opening new paths to understand disease mechanisms and enabling the discovery of new biomarkers, therapeutic targets, and personalized treatments tailored to each patient’s genetic profile.
One effective and promising solution to this challenge is the establishment of international networks that facilitate the secure sharing of genetic and phenotypic information among various research institutions. Such collaboration across countries and specialized centers, can lead to the generation of more extensive and valuable databases, which will enhance the ability to analyse genetic and phenotypic patterns within larger patient cohorts. The BETTER project is committed to addressing this issue, with a primary goal of enabling the secure and efficient use of genetic and phenotypic information across diverse research institutions and medical centers, without the need to share sensitive data.
Many of these rare diseases have a genetic component and recent advancements in genome sequencing have been pivotal for the study of these conditions. The availability of detailed genomic data has enabled researchers to investigate the underlying causes of many rare diseases with unprecedented precision, significantly improving diagnostic accuracy. While small patient population remains as a major challenge, genomic research is opening new paths to understand disease mechanisms and enabling the discovery of new biomarkers, therapeutic targets, and personalized treatments tailored to each patient’s genetic profile.
One effective and promising solution to this challenge is the establishment of international networks that facilitate the secure sharing of genetic and phenotypic information among various research institutions. Such collaboration across countries and specialized centers, can lead to the generation of more extensive and valuable databases, which will enhance the ability to analyse genetic and phenotypic patterns within larger patient cohorts. The BETTER project is committed to addressing this issue, with a primary goal of enabling the secure and efficient use of genetic and phenotypic information across diverse research institutions and medical centers, without the need to share sensitive data.
BETTER in Academia: A glimpse into a BETTER future
06/11/24 12:58 Filed in: Institute of Molecular Genetics and Genetic Engineering
This year, the Institute of molecular genetics and genetic engineering, University of Belgrade had the privilege of hosting a compelling lecture by dr Maja Stojiljkovic on the BETTER Project, offering molecular biology students an opportunity to observe the merging of healthcare and advanced technology.
Dr Stojiljkovic, participant of the BETTER project, talked about the idea of bringing the algorithms to the data by using Distributed Analytics (DA) which has great benefits such as the fact that data remains in the control of the data providers and research can leverage otherwise inaccessible data. By combining distributed artificial intelligence (federated learning) with health data including genomics of the three medical used cases, the project aims to develop innovative tools to support medical staff which will ultimately lead to improvement of citizen’s health outcome. Ensuring that the project remains compliant with GDPR standards was a key point of discussion, highlighting the commitment to privacy and ethical considerations in health data usage.
The lecture concluded with an interactive Q&A session, where students posed insightful questions about the project’s implementation and future developments, indicating a strong interest in how The BETTER Project could shape the future of healthcare research and practice in Europe and worldwide.
- Institute of molecular genetics and genetic engineering (IMGGE), 2024
Dr Stojiljkovic, participant of the BETTER project, talked about the idea of bringing the algorithms to the data by using Distributed Analytics (DA) which has great benefits such as the fact that data remains in the control of the data providers and research can leverage otherwise inaccessible data. By combining distributed artificial intelligence (federated learning) with health data including genomics of the three medical used cases, the project aims to develop innovative tools to support medical staff which will ultimately lead to improvement of citizen’s health outcome. Ensuring that the project remains compliant with GDPR standards was a key point of discussion, highlighting the commitment to privacy and ethical considerations in health data usage.
The lecture concluded with an interactive Q&A session, where students posed insightful questions about the project’s implementation and future developments, indicating a strong interest in how The BETTER Project could shape the future of healthcare research and practice in Europe and worldwide.
- Institute of molecular genetics and genetic engineering (IMGGE), 2024