Challenges on participation in a cooperative group of childhood renal tumors in Brasil

Abstract

SUMMARY OBJECTIVE Children with renal tumors included in clinical trials have significantly better outcomes. In Brasil, the enrollment of patients in clinical trials remains challenging. Here we aimed to describe participation accrual in the Brazilian Wilms Tumor Study Group (BWTSG) and to identify barriers to trial registration of children with renal tumors. METHODS We determined the numbers of renal tumor diagnoses in 105 hospital-based cancer registries from 2001-2009. We then compared these totals with the numbers of renal tumor cases registered in the BWTSG from the same hospitals during the same time period. We also invited members of the Brazilian Pediatric Oncology Society to complete a 5-point Likert-type scale questionnaire regarding their opinions of the importance of participation in cooperative group trials. RESULTS The accrual rate of patient participation per hospital varied from 25% to 76%, and was highest in the South region. The accrual rate of hospital participation also varied according to the region (20-31%) and was highest in the Southeast region. For the questionnaire regarding the importance of participation in cooperative groups, the responses showed an agreement of >75% on 10 of the 13 statements. CONCLUSION Our results demonstrated low accrual of participation in a cooperative group trial in Brasil. We identified variations in registration rates according to geographic region and hospital, which may help targeted efforts to increase registration rates. The survey responses demonstrated that colleagues understand the importance of trial participation.

Perfil Epidemiológico Dos Casos De Aids Em Idosos No Brasil De 2007 a 2017

“…Este estudo agrega na discussão sobre a contribuição de bases de dados como o RHC-INCA na descrição do perfil de saúde da população e estabelecimento de novas políticas públicas de prevenção ao câncer (PANIS et al, 2017;VIANA et al, 2020;BORGES et al, 2020). Desta forma, é importante ressaltar que a negligência na coleta de informações e no cadastramento de dados referentes a clínica e aos fatores de risco modificáveis como o histórico familiar, estadiamento de tumores malignos (TNM) e ocupação, prejudicam os estudos etiológicos e a criação de hipóteses sobre a frequência dos casos de câncer em abordagens regionais e nacionais, bem como empobrece a avaliação do perfil epidemiológico da doença nas diferentes localidades.…”

O Papel Da Fragilidade Na Associação Da Depressão Com a Multimorbidade: Resultados De Um Estudo Transversal a Partir De Uma Coorte Prospectiva

“…Este estudo agrega na discussão sobre a contribuição de bases de dados como o RHC-INCA na descrição do perfil de saúde da população e estabelecimento de novas políticas públicas de prevenção ao câncer (PANIS et al, 2017;VIANA et al, 2020;BORGES et al, 2020). Desta forma, é importante ressaltar que a negligência na coleta de informações e no cadastramento de dados referentes a clínica e aos fatores de risco modificáveis como o histórico familiar, estadiamento de tumores malignos (TNM) e ocupação, prejudicam os estudos etiológicos e a criação de hipóteses sobre a frequência dos casos de câncer em abordagens regionais e nacionais, bem como empobrece a avaliação do perfil epidemiológico da doença nas diferentes localidades.…”

Mapping Pediatric Oncology Clinical Trial Collaborative Groups on the Global Stage

“…47,48 The Brazilian Wilms Tumor Study Group was founded in 1986 and conducted several of its own clinical trials before joining the SIOP Renal Tumor Study Group in 2001 to contribute patients to the randomized SIOP-2001 study. 49,50…”

“…47,48 The Brazilian Wilms Tumor Study Group was founded in 1986 and conducted several of its own clinical trials before joining the SIOP Renal Tumor Study Group in 2001 to contribute patients to the randomized SIOP-2001 study. 49,50 Chile also has a long history of executing collaborative clinical trials through the Programa Infantil de Drogas Antineopl ásicas de Chile (PINDA), founded in 1988. 51 PINDA has developed numerous protocols for multiple tumor types [52][53][54][55] with extensive international collaboration, including with I-BFM 56 and St Jude Children's Research Hospital (SJCRH).…”