New help available for working with complex health data

Which registers are relevant? How do I access them? And what is the procedure for applying for permission in relevant databases, biobanks or the regional health research ethics committees?

The use of health data in clinical research and development projects is a complex area. As anyone who works with personalised medicine in a broad sense is well aware. But from December, help is at hand in the form of the newly established data support centre, CONNECT, which the Central Denmark Region, Aarhus University Hospital and Aarhus University are behind.

"The idea is that there should be one place that you, as a researcher, can contact and receive specific, quick and usable advice on the use of clinical and genomic data within the complex area of personalised medicine. And here we’re talking about personalised medicine in a broad sense," says Christian Fynbo Christiansen, who took up the position of head of the new data support centre last week. He is consultant, clinical associate professor and PhD at the Department of Clinical Epidemiology, which is part of the Department of Clinical Medicine at Aarhus University and Aarhus University Hospital.

Connect with the right expertise

”At CONNECT we connect the specialists who, in different ways, have expertise in carrying out research based on health data. And the fact that the way we operate is network-based, increases the likelihood of us being able to provide qualified help to anyone who contacts us with questions," says Christian Fynbo Christiansen. CONNECT is based on a collaboration between the Department of Clinical Epidemiology, the Department of Molecular Medicine and the Department of Clinical Genetics. He explains that it will typically be him or other researchers from the Department of Clinical Epidemiology who help colleagues, together with experts from the Department of Molecular Medicine.

As Christian Fynbo Christiansen explains, the central idea is for researchers to only have a single point of contact, making CONNECT user-friendly, and that this is via the email address connect@rm.dk, see the CONNECT website also.

"We want to build a centre that creates an environment where we share knowledge that is already present among the researchers and clinicians who work in the region and at the university," says Christian Fynbo Christiansen.

We want to do something extraordinary

The steering committee for CONNECT includes Jørgen Frøkiær, who is head of the Department of Clinical Medicine at Aarhus University. He views CONNECT as an important step towards a comprehensive infrastructure for personalised medicine – and thus a signal that researchers in the Central Denmark Region want to do something extraordinary in the field:

"As part of the national strategy for personalised medicine which was launched by the government in 2016, the Danish Regions organisation launched the idea of regional data support centres. The ambition was to ensure better and more targeted diagnosis and treatment for the benefit of the individual patient – and I’m certain that CONNECT can support this goal," says Jørgen Frøkiær.

"With CONNECT, we now have a centre that supports the spread of personalised medicine in clinical practice throughout the Central Denmark Region. This is true regardless of whether the researcher is employed at the university, in the region or – as is the case for many employees at the Department of Clinical Medicine – in both, and this is an important step in the right direction," says Jørgen Frøkiær.

Ten hours of free help

In practical terms, all researchers at the university and in the region can get up to ten hours of advice free of charge, if their research falls within CONNECTS’s definition of personalised medicine. As Christian Fynbo Christiansen puts it:

"The premise for being able to target treatment for the individual patient is that there are patterns in data across groups which would, in traditional diagnostics, be assessed as needing the same treatments," he says.

“We define personalised medicine as prevention, diagnostics and treatment that is targeted at the individual based on all accessible data, which can involve genomic data, register-based data and other health data, and if you as a researcher are in doubt as to whether you have a query or question which CONNECT can advise on, then I think you should find out by sending us an email," he says.

Facts: CONNECT can help researchers to:

• Translate an idea or an issue into research questions and hypotheses
• Prepare research- and investigation plans and determine choice of methodology, research design and budget
• Obtain approvals from relevant databases and biobanks, the regional health research ethics committees, and report data records etc.
• Select data output from the databases or data sources involved
• Link, process, analyse and interpret data
• Report results
• Find legal assistance

Contact

Please contact CONNECT via email at connect@rm.dk or by phone: (+45) 8716 8115

The key people at CONNECT are:

Secretary at CONNECT, PA Sascha Vittrup Rasmussen
Department of Clinical Epidemiology at
The Department of Clinical Medicine at Aarhus University
Aarhus University Hospital
Tel.: (+45) 8716 8115
Email: svr@clin.au.dk

Manager at CONNECT, Consultant, Clinical Associate Professor & PhD Christian Fynbo Christiansen
Department of Clinical Epidemiology at
The Department of Clinical Medicine at Aarhus University
Aarhus University Hospital
Mobile: (+45) 8716 8218
Email: cfc@clin.au.dk