Outcome of childhood acute lymphoblastic leukemia (ALL) in India, although
improving, has not kept pace with >80% cure in developed nations [1]. In
contrast to resource-plenty nations, there is paucity of accurate
epidemiological data [2,3]. Out of the estimated >10000 new ALL patients
in India annually, few are adequately treated. Therapy refusal and
abandonment and loss to follow-up and lack of reporting of cancer related
mortality are major challenges [1].
Although, national cancer registries exist, there are
fraught with several limitations including under-reporting,
under-diagnosis, and limitations in personnel and techno-logical expertise
[2,3]. Hospital based registries are likely inadequate and may
underestimate the true disease burden. Although efforts by investigators
in a few cities are commendable, there has been a lack of prospective and
precise and nationwide effort to report all the cases with a separate
focus on childhood malignancies, especially ALL [3,4]. In addition,
investigators have suggested a plausible increase in incidence of ALL with
wide variation in incidence in different geographic locales [2,4].
Thus, there is a clear need of accurate estimation of
incidence and epidemiology of childhood ALL in India to be able to
estimate the true disease burden. A national population based childhood
ALL registry with high-resolution data collection would be pivotal to
achieve these goals. This in turn is important for identification of
pattern of disease and its change, risk factors for prognosis, delineating
the biology of disease and management lacunae in ALL an Indian setting.
Furthermore, organized efforts are imperative to prevent both under
diagnosis and reporting with emphasis on reporting of all events and
cases. Establishment of such registry would require multimodal and
multilevel efforts involving governmental and non-governmental/voluntary
organizations, cancer-treatment centers, infrastructural facilities,
finances and ongoing surveillance for quality assurance.
A ‘National Childhood ALL Registry’ would serve as a
stepping stone in introduction of remedial measures to improve the ALL
survival. We earnestly request the Indian Academy of Pediatrics to
contribute to this mound which would undoubtedly help in improving the
outcome of childhood ALL in India.
References
1. Kul Marwaha RK, Trehan A, Bansal D. Survival outcome
in childhood ALL: experience from a tertiary care centre in North India.
Pediatr Blood Cancer. 2009; 53: 168-73.
2. Arora RS, Eden T, Kapoor G. Epidemiology of
childhood cancer in India. Indian J Cancer. 2009;46:264-73.
3. Swaminathan R, Rama R, Shanta V. Childhood cancers
in Chennai, India, 1990-2001: incidence and survival. Int J Cancer.
2008;122:2607-11.
4. Swaminathan R, Sankaranarayanan R. Under-diagnosis
and under-ascertainment of cases may be the reasons for low childhood
cancer incidence in rural India. Cancer Epidemiol. 2010;34:107-8