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Webinar Recording: Rare Disease Patient Cohort Identification Using AI/ML Models and Federated EHR-based Real-world Data Infrastructure

Date: Tuesday, September 21, 2021

As rare diseases are so rare, patients are often misdiagnosed for many years, or never correctly diagnosed. Electronic health records hold much important information that can be used to correctly diagnose and treat these patients, but identification of phenotypic sets is hard to extract from reams of data.

In this webinar, we assess the issues facing patients of rare and orphan diseases. We look at current developments in large hospital patient data networks, which enable automated patient search while keeping the identifiable patient data within the hospital systems, as well as the growing sophistication of artificial intelligence/machine learning models which can learn to identify sets of phenotypes for hard-to-diagnose diseases.

We hear the following topics from the following experts:


Industry perspective  Dr. Handan Umur, Medical Manager, Rare Diseases, Sanofi
Enabling More: AI/ML Strategies within a Global EHR-based Hospital Network  by Douglas Drake, Senior Director, Customer Solutions, Clinerion
Developing rare disease AI/ML models – Christopher Rudolf, CEO, Volv Global
Panel Discussion + Q&A moderated by Dr. Ottó Skorán, CEO, Svabhegy Paediatric Hospital


Dr. Otto Skoran, MD
CEO, Svabhegy Paediatric Hospital and Senior Director Strategy & Innovation, Doktor24 Health Centre

Graduated from Semmelweis University as a Medical Doctor in 1993; researcher and physician at the National Institute of Cardiology, Budapest for 6 years and received here his internal medicine board certification; fellowship worker at University of Parma in 1996; founder and CEO of the Goodwill Research Ltd., a company with main focus on pharmaceutical and clinical research, from 1998 for more than 10 years; co-founder and later executive director of the reorganized Svábhegy Pediatric Hospital. From 2020 partner and senior director strategy & innovation, Doktor24 Health Centre, Budapest. Otto Skoran is member of the various medtech start-ups, as mentor, founder, and/or investor. Co-founder of the Medicines for Children Research Network Hungary (2013- ).

Dr. Handan Umur
Medical Manager, Rare Diseases

Speaker details to come.

Douglas Drake
Senior Director, Customer Solutions

Douglas Drake, MS, MBA, is originally a life science researcher with a passion for digital enablement of better patient care. For over 30 years, Douglas has worked in various aspects of diagnostics, therapeutic research, drug discovery and global business development. He has broad experience in transformative technologies, data sciences, digital healthcare and applying these to improving patient engagement and the patient journey.

Christopher Rudolf
Founder & CEO
Volv Global

Christopher is the CEO and chairman at Volv Global, an applied data science company. Data Science, AI and data are the lifeblood of Volv and Christopher is excited to be bringing their cutting-edge offerings to market. Volv’s mission is to speed science, reduce the cost of healthcare and so enhance the economic output and well-being for all. Christopher is also a visiting professor at 2 leading universities in Switzerland, EPFL and UNIL.

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