Kawasaki disease registries reap results experience in Mumbai
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《美国医学杂志》
1 Flat No. 31 Kailash Darshan, Kennedy Bridge, Mumbai-400007, India
2 Sr. Registrar, Jaslok Hospital and Research Center, Mumbai, India
We read with interest the clinical brief titled "Kawasaki Disease: Are we missing the diagnosis"[1] The article endorses our belief that Kawasaki disease (KD) is indeed under diagnosed, under-reported and under-treated in our country.
We believe that setting up local disease registries can help improve both awareness and reporting. Spurred by a run of six cases we saw in Mumbai in 2002 and reported by one of us [2], (this reference has been cited wrongly by the authors and is correctly presented below for the information of your readers) we worked with the Mumbai branch of Indian Academy of Pediatrics to launch a KD Registry in January 2003. Prior to the launch of this registry there was only 1 published case report from the city of Mumbai. Today the Registry has 40 documented cases which are being followed up. The Registry has a uniform proforma for case documentation with clinical photographs, whenever possible. Physician awareness is being enhanced through talks, guest lectures and posters at conferences. All doctors reporting cases receive a set of recent references on the disease. An English parent information booklet (and a Gujarati translation) has been compiled and is available free to both doctors and parents. A 24-hour phone line is available and a pharma liaison helps obtain IVIg at short notice and occasionally at concessional rates. The registry also records 'misses' i.e. cases that are not KD in order to understand the spectrum of diseases that may mimic KD in our setting.
Our experience and feedback from pediatricians of Mumbai reinforces our belief in this strategy which can help to increase awareness of rare or seemingly rare disorders, educate physicians and parents and provide a uniform base for data collection and prospective research. Those desirous of setting up similar but independently functioning registries for KD in their localities may please contact any of the authors.
We have two corrections in connection with the published article.
1. In collating the Indian data the authors have used our series as the last published work from India (they would have done well to cite our reference under their "[Table 2]" which has been used from our article).
2. There are at least six more cases/series reported from India since our report which have not been considered in the total collating process. These have been tabulated above for the benefit of your readers.
References
1. Sridhar MR, Goel H, Anirudh D, Lodha R, Kabra SK. Kawasaki Disease: Are we missing the diagnosis Indian J Pediatr 2005; 72 : 873-875.
2. Khubchandani RP, D'Souza S. Kawasaki Disease in India. Pediatric Rheumatology Online Journal 2004; 2: No.2 p162(Khubchandani RP, Khemani )
2 Sr. Registrar, Jaslok Hospital and Research Center, Mumbai, India
We read with interest the clinical brief titled "Kawasaki Disease: Are we missing the diagnosis"[1] The article endorses our belief that Kawasaki disease (KD) is indeed under diagnosed, under-reported and under-treated in our country.
We believe that setting up local disease registries can help improve both awareness and reporting. Spurred by a run of six cases we saw in Mumbai in 2002 and reported by one of us [2], (this reference has been cited wrongly by the authors and is correctly presented below for the information of your readers) we worked with the Mumbai branch of Indian Academy of Pediatrics to launch a KD Registry in January 2003. Prior to the launch of this registry there was only 1 published case report from the city of Mumbai. Today the Registry has 40 documented cases which are being followed up. The Registry has a uniform proforma for case documentation with clinical photographs, whenever possible. Physician awareness is being enhanced through talks, guest lectures and posters at conferences. All doctors reporting cases receive a set of recent references on the disease. An English parent information booklet (and a Gujarati translation) has been compiled and is available free to both doctors and parents. A 24-hour phone line is available and a pharma liaison helps obtain IVIg at short notice and occasionally at concessional rates. The registry also records 'misses' i.e. cases that are not KD in order to understand the spectrum of diseases that may mimic KD in our setting.
Our experience and feedback from pediatricians of Mumbai reinforces our belief in this strategy which can help to increase awareness of rare or seemingly rare disorders, educate physicians and parents and provide a uniform base for data collection and prospective research. Those desirous of setting up similar but independently functioning registries for KD in their localities may please contact any of the authors.
We have two corrections in connection with the published article.
1. In collating the Indian data the authors have used our series as the last published work from India (they would have done well to cite our reference under their "[Table 2]" which has been used from our article).
2. There are at least six more cases/series reported from India since our report which have not been considered in the total collating process. These have been tabulated above for the benefit of your readers.
References
1. Sridhar MR, Goel H, Anirudh D, Lodha R, Kabra SK. Kawasaki Disease: Are we missing the diagnosis Indian J Pediatr 2005; 72 : 873-875.
2. Khubchandani RP, D'Souza S. Kawasaki Disease in India. Pediatric Rheumatology Online Journal 2004; 2: No.2 p162(Khubchandani RP, Khemani )