James Best: Mapping resources

MEDICAL research is a very competitive business these days, with less than one in five applications to major national grant schemes being successful.

 

So it is easy to understand why competition among researchers can dominate over collaboration at the local and national levels.

 

Intense competition for funding can also tend to obscure the real end goal of biomedical and particularly clinical research — to reduce the burden of disease. 

 

Yet, major discoveries and advances in patient care are increasingly occurring through large national and international collaborations. The collection of longitudinal patient data and intervention studies of new therapies in particular require participation of multiple sites. 

 

In type 1 diabetes research, the need to focus on outcomes and translation into better medical care is well understood by the key stakeholders, namely patients and their families.

 

Because of its close connection with the type 1 diabetes community and the funding and influence it can bring to support research, JDRF (Juvenile Diabetes Research Foundation) is able to shape the way research is conducted, as well as the kind of research funded. 

 

Now research collaboration is set to increase, with the recently published Type 1 Diabetes Clinical Research Resource Map 2015, prepared by JDRF with support from the Macquarie Group Foundation to provide “an analysis of the current type 1 diabetes clinical research landscape in Australia”. Currently, sharing or connectivity of data and biospecimens between institutions and access by external researchers appear to be very limited.

 

The Resource Map focuses on major Australian institutions rather than individual researchers, listing 19 that are active in type 1 diabetes clinical research. It provides an inventory of databases, biospecimen collections and clinical research networks, with a brief but useful description of their capabilities and accessibility. 

 

The only Australian clinical research network that is specific to type 1 diabetes and able to provide substantial research funding is the Australian Type 1 Diabetes Clinical Research Network. Established by JDRF in 2010 with a $5 million federal government grant, further funding of $35 million will be provided through the Australian Research Council as a Special Research Initiative. 

 

The JDRF Clinical Research Network also funded the Australasian Diabetes Data Network (ADDN), established by the Australasian Paediatric Endocrine Group. The ADDN currently includes five specialist tertiary centres for collection on a single platform of baseline and longitudinal data from more than 80% of patients with new-onset and existing type 1 diabetes, with data access available to external researchers. 

 

The Resource Map goes further than just documenting existing capabilities, with analyses of views from researchers on funding and on barriers to sharing of data and biospecimens. 

 

Barriers to sharing data include the burden of ethics approval and difficulties raised by privacy issues, concerns about data reliability and compatibility of information, and the resources and infrastructure required. 

 

Perceived barriers to sharing biospecimens include additional concerns about how well the resource would be used and about the finite nature of biospecimens. 

 

Yet, significantly, more than 50% of research groups surveyed for the Resource Map expressed willingness to contribute to a shared database and biobank and espoused funding for shared facilities.

 

Publication of the Resource Map is timely, with significant resources being made available to JDRF through the Australian Research Council to fund clinical research into the prevention, treatment and cure of type 1 diabetes. It displays the potential for leveraging research output through collaboration. 

 

The success of the Australian Type 1 Diabetes Clinical Research Network will depend not only on the successful completion of individual funded projects, but also on whether the program can foster a high level of collaboration nationally, with the opportunity for stronger international partnerships in type 1 diabetes research.