Understanding Childhood (Chronic) Ailments Network – Asia (UCAN-A) is a new SingHealth strategic initiative and is registered as a programme within the SingHealth Duke-NUS Paediatrics Academic Clinical Programme (PAEDS ACP) and supported by Eureka Institute. UCAN-A aims to create a network of clinical and translational research hubs throughout Asia, with an initial pivot in Singapore.

The UCAN-A innovative model will be the first where the needs of the poor and underserved patient population are addressed by involving patients and their families as protagonists, participating in their own care at the same time as they contribute to, and influence, translational research.

Patients and their families in poor and underserved areas will be provided with education, support and standardised clinical care through locally based health care hubs. Health care hub Clinicians and Registered Nurses will be provided with clinical training and standardised care protocols, and will be trained to empower patients to control their own care and to contribute to the flow of research data and clinical samples. High-tech hubs will coordinate all education and research, and using Translational Medicine, develop standardised research platforms and expand research networks to facilitate the rapid translation of scientific findings and treatments, specifically tailored for children, into tangible benefits for patients.

Addressing Unmet Needs

Poverty and lack of education do not only affect the social outcomes of millions of children in Asia, but also their health. Due to limitations in diagnosis and treatment, and compounded by a lack of education and support, patients are prone to under-utilise or withdraw from treatment. These patients do not understand the importance of research to better their own lives, hence as a result, there is a large gap in the information and data flow between clinical care providers and researchers.

There are dramatic unmet medical needs layered along various dimensions.

  • First and foremost, for many chronic diseases of childhood, there is a fragmentation within the standard of care, which in many cases is not available;
  • There is also a profound separation between providing care and understanding the disease through research;
  • Another problem is that fragmentation leads to lack of critical mass. This relegates these diseases to the status of orphan or orphan like;
  • Lack of critical mass certainly hampers development of new diagnostic and therapeutic approaches;
  • Diagnosis and treatment are mainly based on clinical phenotypes and on trial and error approach. Clinical phenotypes do not reflect the actual molecular make up of the patients, so stratification of patient subsets based on knowledge of immunology and molecular genetics is dramatically needed worldwide. The problem is particularly grave in Asia because most of the phenotypes whichever define diagnosis are being developed in the western countries and such phenotypes often do not correspond to what we see in daily clinical practice in Asia.

Altogether these problems and the consequential disconnect between clinical care and translational research are particularly grave in Asia where there are dramatic discrepancies in resources and development among neighbouring countries.

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