UCAN-A pilot initiative to establish paediatric autoimmune disease research network in Asia to accelerate translational research launched by SingHealth Duke-NUS Academic Medical Centre’s Paediatrics ACP and Eureka Institute for Translational Medicine
Consensus Conference to be held in Singapore to kick start the initiative
13 February 2017, Singapore
SingHealth Duke-NUS Academic Medical Centre’s Paediatrics Academic Clinical Programme (ACP), in collaboration with Eureka Institute for Translational Medicine has launched a new programme; Understanding Childhood (Chronic) Ailments Network – Asia (UCAN-A). By tapping on both organisations’ broad spectrum of international network and activities, along with the existing UCAN network, it has brought about the ideation of a network of clinical and translational research hubs in Asia to advance research in paediatric autoimmune diseases for UCAN-A. Autoimmune diseases in children, like arthritis and diabetes, are incurable; these childhood chronic diseases can potentially lead to permanent disability and, in some cases, mortality in children.
Led by Professor Salvatore Albani (refer to Annex A), Director of the SingHealth Translational Immunology and Inflammation Centre, Senior Consultant and Senior Clinician Scientist with the Division of Medicine at KK Women’s and Children’s Hospital (KKH) and President of Eureka Institute for Translational Medicine, UCAN-A plans to establish a coordinated network of peripheral clinical and translational research hubs across Asia with its centre in Singapore, the first of the high-tech hubs.
Under the framework, local health care hubs will be built in areas having underserved patient populations and with sufficient critical mass to contribute research findings to UCAN-A’s projects. These hubs will be supervised by trained clinicians, comprising doctors and registered nurses.
These clinicians are trained to provide clinical care and standardised care protocols. This helps to educate patients and provide them with information so that the patients and their families are able to better understand their ailments and treatments. Information related to research, including the importance of data and sample collection will also be provided to patients and their families. The data, clinical samples and feedback on treatments are then channelled to the central high-tech hubs such as Singapore.
The central high-tech hubs serve as network-wide storage platforms for research samples and data, as well as centre for coordination of education and research efforts. Through translational research, standardised research platforms can be developed and research networks can be expanded to facilitate rapid translation of scientific findings and treatments, specifically tailored for children, into tangible benefits for patients.
Figure 1. Framework of Understanding Childhood (Chronic) Ailments Network – Asia
Focus of UCAN-A
In its initial stages, UCAN-A will focus on diseases in Paediatric Rheumatology, such as Rheumatic Fever, which are chronic childhood illnesses in many underserved countries in Asia. Existing networks under the UCAN initiative, namely, the Europe-based Understanding Childhood Arthritis Network – Utrecht (UCAN-U) and Canada-based Understanding Childhood Arthritis Network – Canada (UCAN-C), have already seen notable contributions towards medical research on these diseases in their respective regions.
UCAN comprises four main network organisations active in the field of childhood arthritis, namely the Europe-based Paediatric Rheumatology European Society (PRES), Paediatric Rheumatology INternational Trials Organisation (PRINTO) and the North America-based Childhood Arthritis and Rheumatology Research Alliance (CARRA) and Pediatric Rheumatology Collaborative Study Group (PRCSG).
Several founding groups of UCAN-A with state-of-the-art facilities and leadership in paediatric rheumatic diseases form the foundation for leveraging existing resources and expertise. With the significant pool of patients in Asia that can be recruited for research, UCAN-A has the opportunity to achieve the critical mass necessary for meaningful translational and clinical research, as well as the implementation of clinical trials.
The initial phase of UCAN-A will be run in Singapore, the first central high-tech hub, on selected UCAN-A projects. Subsequently, partners in the network can mirror these projects, with samples and data to be collected and researched upon in Singapore.
In its second phase, plans are in line to extend the number and scope of projects across UCAN-A’s network, as well as establish other high-tech hubs within Asia.
Consensus Conference in February to kick start the initiative
The UCAN-A Consensus Conference will take place at The Academia (located in Singapore General Hospital campus) on Monday, 13 February 2017. More than 20 key opinion leaders (details available upon request), some from potential UCAN-A network countries such as Australia, Japan, Malaysia, New Zealand, the Philippines and Thailand will be present at this conference. Lending his expertise and experience, with the UCAN-U initiative at this conference, is the Co-Chairperson of UCAN-U, Professor Berent Prakken, Professor, Immunology and Pediatrics at University Medical Centre, Utrecht, the Netherlands and Chairperson, EUTRAIN (European Translational tRaining for Autoimmunity & Immune manipulation Network) and Chief Executive Officer, Eureka Institute for Translational Medicine.
The leaders at this conference will define the standard operating procedures for the design of translational-clinical projects – comprising diagnosis of patients, intervention for patients, and the standards applied for the collection of samples and clinical data which will allow data sharing and research acceleration particularly for an Asian population.
Two workgroups will spearhead the initiative with the first focusing on the network’s clinical and ethics guidelines, including the standardisation of protocols across the network while considering the cross-cultural sensitivities, national laws and regulations, as well as ethical issues that may arise in the different countries in Asia. The second group will focus on data and technology guidelines within the network, focusing on the technical processes and protocols in clinical research execution such as sample collection, storage, shipment and, subsequently, the interchange of data across the network.