Rudi GJ Westendorp
Afdeling for Epidemiologi
Bartholinsgade 6Q, 2. sal
1356 København K
Web: Center for Sund Aldring
Web Spor 3: Individualized health
We need a better understanding of human ageing to interfere in the psycho-social and bio-molecular process and prevent the occurrence of degenerative diseases. To this end we connect biological specimen with population registers, attracting excellent researchers, and using their complementary expertise to enablie people to live healthier for longer.
Data For Good Science is the communication platform for The Novo Nordisk Fonden Challenge research project “Harnessing the Power of Big Data to Address the Societal Challenge of Aging”. It comprises of three main components: science, data, and ethics.
Babies born today are likely to live up to 100 years old. While this exceptional life expectancy is the result of various man-made innovations, modern medicine cannot prevent that large numbers of older persons end up in ill health with a decrease in quality of life. This personal challenge comes with increased societal costs and prompts a proactive attitude prioritizing on knowledge, prevention, and treatment.
Ageing is the most important single risk factor of various degenerative diseases but the underlying mechanisms has yet to be elucidated. Each of us age with a different pace and the underlying process varies depending on our genetic heritage and the environmental conditions in which we live. It explains why older persons look dissimilar, have diverse disease manifestations, and respond differently to medical treatments. Characterizing the ageing process among individuals will provide measurable leads and targets for better diagnosis, therapy, and prevention of age-related degenerative diseases.
Over the past decades, there has been significant progress on establishing electronic patient records, high definition population registries, and linkage between these different sources of data. The techniques for handling and analysing large quantities of data have become mature using novel computational approaches. These major advancements provide a unique opportunity to better understand the ageing process and to instigate series of interventions to prevent and delay the occurrence of diseases.
Denmark has the advantage of having abundant data on the entire population as well as pathological specimens that go back to the beginning of the 20th century. Combining these exceptional sources will help identify different patterns of ageing among individuals. Such a national approach overcome typical pitfalls of surveys and cohort studies which are often held back by low participation rates particularly among the very healthy and severely diseased.
The Danish registers are an unprecedented source for knowledge and understanding how to improve individuals’ lives. Substantial progress in understanding health and medical sciences is possible through a chain of information; yesterday’s citizens donated knowledge that benefit today’s citizens, and today’s patients donate knowledge for the good of tomorrow’s patients.
The use of personal data for research is only sustainable when it balances the rights and interests the individual with that of society as a whole. Scientific explorations of personal data should be carried out in such a way that the intrusion of people’s privacy is minimal and appropriate. The specimens and data will be examined as follows:
- Personal data are stored in such a way that they cannot disclose individuals;
- Authorized researchers are given access to data under strict confidentiality control;
- All use of data is consistently logged and monitored.