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correspondence

Indian Pediatr 2011;48: 821

Childhood Acute Lymphoblastic Leukemia: Need of a National Population Based Registry


RK Marwaha and KP Kulkarni

Division of Pediatric Hematology-Oncology, Advanced Pediatric Center, PGIMER, Chandigarh, India.
Email: [email protected]
 
 


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
 

 

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