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Denmark to Make Genomic Data Centerpiece of New $14.2M Personalized Medicine Initiative

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NEW YORK (GenomeWeb) – The Kingdom of Denmark will spend DKK100 million ($14.2 million) over the next three years to implement its new National Strategy for Personalized Medicine, dubbed Per Med.

Core elements of the new program include integrating genomic data into electronic medical records and the establishment of a national genome center, according to its organizers.

The two main government entities implementing Per Med are the Danish Ministry of Health and Danish Regions, a political organization that represents the five regions of the Scandinavian country. In Denmark, the healthcare and hospital system are administered at the regional level.

Maj-Britt Juhl Poulsen, an executive adviser, and leader of Danish Regions' quality and research team, said that her organization began pushing for a national personalized medicine initiative in Denmark several years ago and that Per Med, which has been funded initially from 2017 through 2020, is the outcome of that effort.

"Now we have an actual strategy between the government and the regions and we are implementing this strategy," Poulsen said.

According to information provided by Poulsen, the goals of Per Med include the establishment of an organization for the development of better and more targeted patient healthcare through the use of new technologies; a strengthening of the ethical and legal aspects related to the use of genetic data in healthcare; the initiation of research and development projects; and the creation of shared technological infrastructure, as well as a joint governance scheme at a national level, both in healthcare and research.

"We are just trying to march in the same direction instead of having people doing all kinds of things for themselves," said Poulsen.

As part of Per Med, the Danish Ministry of Health is in the process of setting up a new national genome center. While the center will be located in or near Copenhagen, some part of its infrastructure will be located in Aarhus, the country's second largest city. Last month, the ministry announced that it had tapped Gert Sørensen, previous director of Aarhus University Hospital, to lead the new genome center.

However, unlike some national genome centers that are focused on research, Denmark's new center will serve more as a hub for integrating genomic data and EMRs, all with an eye toward building a resource that can be used to supply Danish citizens with personally tailored, efficient care. The center will also establish processes for analyzing and sharing data in a national genome database, as well as making genotypic and phenotypic data available to researchers within an ethical framework.

"It is the state agency for human genome data. That's the model," said Søren Brunak, a professor and bioinformatician at the University of Copenhagen who played.a role in the creation of Per Med."It's not going to be an organization with 2,000 people," he said. "It is going to organize the stakeholders at universities and the hospitals maybe also industry and be a sort of regulatory type of organization," he said.

Poulsen said that 80 percent of clinical specialists in Denmark already use genetics in their practices. According to information published by the Ministry of Health, about DKK500 million has been invested in creating infrastructure relevant to personalized medicine in the past few years, with funding for sequencing equipment, IT, and biobanks.

Representatives of the Ministry of Health did not respond to queries seeking comment on Per Med.

The country's biorepositories have also undergone integration recently. In 2016, five of these repositories — such as the Danish Blood Donor Biobank, following 110.000 Danes prospectively  — came under a new umbrella administered by Danish Regions called Bio- and Genome Bank Denmark. These and other major biobanks are represented in a searchable National Danish Biobank Register, which presents more than 22 million samples, a respectable number for a country of 5.7 million.

"The perspective is to sequence the genomes and store [the data] in one place so that we can benefit from it both in normal treatment and diagnosis but also in research," Poulsen said. When asked about who would carry out the sequencing of Bio- and Genome Bank Denmark's samples, Poulsen said the work would take place "in the public sector," rather than in partnership with a private entity. She added that decisions about what kinds of sequencing platforms or bioinformatics tools will be used in that process have not yet been made.

As more data becomes available in coming years, it will be linked to Denmark's extensive EMRs. Brunak, who has focused his work on EMR mining, said that Danes have had social security numbers since 1968, which means that a human genome sequenced today could be potentially linked back to almost half a century of healthcare events. Danish Regions is the go-to organization for the raw patient records, Brunak noted.

"That's different from the US, where an individual may have one healthcare provider for a couple years and then people move on," said Brunak. "Here we have uninterrupted data across the whole population," he said. "There are a lot of opportunities for linking genomic data to these records, and for some big projects, say, the sequencing of 100,000 genomes, we could define the cohorts via their histories and treatment outcomes," he said.

While $14.2 million has been set aside to fund Per Med through 2020, organizers are counting on public research resources, regional healthcare resources, and local private actors, such as the Novo Nordisk Foundation, which is headquartered in Hellerup, outside of Copenhagen, to contribute to the effort.

"The 100 million kroner is seed money, it's a relatively small amount that will be spent on establishing infrastructure," said Brunak. "Several foundations have expressed interest in the area," he added.

It is also unclear to what extent Denmark's biorepositories will be sequenced either at the whole genome or exome level though it is the intention of those involved with Per Med to do so. "This is what the genome agency will assist in prioritizing," said Brunak. He said that exome sequencing of patient samples is already common at some Danish hospitals, and he forecasts an expansion in patient-related sequencing, as well as in funding available for the sequencing of large cohorts.

"I think you will see a gradual transition to whole-genome sequencing in more areas," Brunak said.

The availability of greater support and access to more genomic data is of interest to Danish researchers. Henrik Ullum, a professor of clinical immunology and chief physician at Copenhagen University Hospital, sits on the management board of Per Med, where he represents Denmark's medical societies.

"I hope there will be a lot of research and that our members will take part," Ullum said. "We can improve patient therapy and create a lot of knowledge in Denmark."

According to the Ministry of Health, these kind of research projects are envisioned as a second phase of Per Med. Some of the strategy's aims are to consolidate regional research support within the program and initiate new projects while continuing to focus on the ethical and legal aspects of that research.

Denmark is embarking on its Per Med strategy at a time when similar efforts are underway in many other European countries, including the UK, Iceland, France, Estonia, and Switzerland. Both Ullum and Brunak drew parallels between the Danish project and Genomics England, which is administered through the UK's Department of Health. At the same time, Brunak said that Denmark's existing IT infrastructure is more uniform than the UK's, which may give it an advantage in implementing personalized medicine at a national level.

"Our challenge is to embed the supercomputing needs and transfer of actionable information to a system that is already well organized and has been collecting data for decades," said Brunak.  "They [the UK] have done an impressive amount of work, but the IT infrastructure in healthcare there is different from countries in the Nordic region."

Brunak also mentioned the Swiss Personalized Health Network, which commenced in January with a three-year budget of CHF40 million ($41 million) to support IT and clinical data interoperability. While the funding amount exceeds what Denmark has set aside for Per Med, he noted that the Swiss have a more challenging situation on their hands.

"The Swiss have a quite complex situation without the same regulations in different cantons, they don't have a uniform shared IT infrastructure for the country," said Brunak. "Here we need to invent things in a running system, rather than create things in parallel next to the running model," he said. "Our challenge is to embed the supercomputing needs and transfer of actionable information to a system that is already well organized and has been collecting data for decades."

Going forward, Per Med will face challenges though, Brunak acknowledged, especially in making new data available to the public health system as it becomes available. "It's one thing to make a one-time actionable list of variants, but how do you, across indication areas in collaboration with the medical societies, keep that updated week by week?" he said. "There will be a need to keep things current."

As such, the strategy's organizers see Per Med as a process of consolidating and upgrading the Danish healthcare system, rather than a fixed attainable goal. "In five years, perhaps, we will see a big impact," said Poulsen. "What we can hopefully achieve by 2020, is do things better by collaborating."

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