Encouraging epidemiological and outcomes research in Asia (2008)

In the past decade there have been major strides made in research activities in the Asia-Pacific region. Research in the region is important because there are obvious ethnic and regional differences in the manifestation of rheumatic diseases and their prevalence. It is thus important that epidemiological and observational studies be supported in different parts of Asia, ideally with collection of serum and DNA to allow studies of genetic epidemiology. These studies are important to: (i) ascertain the degree and prevalence of disability caused by rheumatic disorders; (ii) help us understand the ethnic differences and disease patterns and their different impacts on communities; (iii) develop appropriate measurement instruments when interventions are considered; and (iv) provide a sound basis for government and health bodies to provide adequate resources to treat rheumatic diseases. For example, it is well known that systemic lupus erythematosus (SLE) is more severe in several Asian ethnic groups than in Caucasians, and is more common in Asian migrants living in Europe or the US. Primary osteoarthritis of the hip is rare in Asia, yet this is not that widely known.1 Its associations can be uniquely regional too. The results of studies in Europe and the US may not always be extrapolated or be applicable to each local setting. What are considered good measures and interventions in a certain part of the world may not mean the same things to another. These have been well addressed in the excellent review by Cheung and Thumboo.2 There are also studies which show that there are genetic and ethnic differences in phamarcokinetics and issues of efficacy and toxicity are major concerns.3 The challenges faced by researchers in rheumatic disease in this region are immense. Much of the work of collecting data, seeing patients and following cohorts are done by busy clinicians who may be ill-equipped, poorly supported and overworked. Of course, the level of support varies greatly between units; from the sophistication of modern laboratories and departments in Japan, Singapore and Australia, to much less well-resourced set-ups in, say the Philippines and more remote areas where research is understaffed and underfunded. In an earlier editorial piece of this journal, the COPCORD studies were mentioned and there are plans to pursue other initiatives.4 These studies laid the foundation for epidemiological studies in various parts of the region, and lent insights into the prevalence of rheumatic diseases as a major cause of disability in this vast region.5 In order to advance the cause, this journal should support research done locally, and should provide an avenue whereby such data is published and disseminated. In this issue are published two different studies where instruments to measure functional status and treatment outcomes in patients with rheumatic diseases have been translated and developed for the local setting.6,7 There are challenges associated with keeping the instrument within its original intent when trying to make it relevant to the local setting. An example of this in the Malay study is substituting the task “opening a carton of milk”, for opening a “can of condensed milk”, the former task being irrelevant as rural Malays do not drink milk from cartons.6 There are of course, many examples of local “adjustments” in translated instruments. The general rule is not to invent a new instrument where possible, but to adapt an existing one; and yet in some situations, the question or concept may be too difficult, or irrelevant, for a particular culture. It should be the aim of the journal to encourage high-quality research in the region. This will generate interest from government and pharmaceutical partners, to cater for the needs of local populations. It may require more initiatives from APLAR and leadership to show support to such groups, and also to facilitate dialogue in the use of standardised tools of measurements where appropriate. It is hoped that researchers within and without the APLAR region will provide expertise where needed and guidance for groups working in this area of great need.