Pediatric Cancer Registry in Turkey 2009-2018 (TPOG & TPHD).

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e21510-e21510
Author(s):  
M. Tezer Kutluk ◽  
Akif Yeşilipek
Keyword(s):  
Childhood Cancer ◽  
Children And Adolescents ◽  
Cancer Registry ◽  
Pediatric Cancer ◽  
Health Care Professionals ◽  
Survival Rates ◽  
Age Distribution ◽  
Soft Tissue Sarcomas ◽  
Cancer Registries ◽  
Term Survival

e21510 Background: In Children and adolescents aged 0-14, each year more than 200.000 new cancer cases are expected at global level. For the planning and implementation of an effective pediatric cancer control program, pediatric cancer registries are essential. The long term survival rates have been improved to 85% in high income countries, however it is still less than this in LMICs. This work presents the most updated results of the pediatric cancer registry in Turkey. Methods: Turkish Pediatric Oncology Group and Turkish Pediatric Hematology Association has established the Pediatric Cancer Registry in 2002. The childhood cancer cases registered between 2009-2018 was included in this analysis. International Childhood Cancer Classification System was used for the classification. Essential demographic findings, ICD-O-3 morphology and topography codes were recorded for each case. Results: During the 10 years from 2009 to 2018, 15713 cases were registered. For all cases, median age was 6.7 year (0-17; M/F 8838/6867, 3 hermaphrodite, 5 unknown). Age distribution was 0-4 yrs, 40.7%; 5-9 yrs, 24.4%; 10-14 yrs, 23.2%; 15-19 yrs, 11.7%) The distribution of the tumor types were [number of cases, percentage of total, median age yrs, M/F]: Leukemia (4368, 27.8%, 5.4, 2519/1849); Lymphoma & other RES tumors (2996, 19.1%, 9.7, 2012/979, 1 hermaphrodite & 4 unknown); CNS [brain & spinal] (2089, 13.3%, 7.1, 1142/947); Symphatetic system (1243, 7.9%, 2.4, 650/593); Retinoblastoma (358, 2.3%, 1.4, 204/154); Renal (788, 5.0%, 3.3, 369/419); Liver (260, 1.7%, 1.8, 143/117); Malignant bone (1030, 6.6%, 12.6, 566/464); Soft tissue sarcomas (1052, 6.7%, 7.4, 611/441); Germ cell (971, 6.2%, 8.4, 346/622, 2 hermaphrodite, 1 unknown); Carcinoma & other malignant epithelial (462, 2.9%, 13.7, 226/236); Other/non-specific malignant (96, 0.5%, 7.8, 50/46). Five year survival rate was found as 70.8%. Conclusions: This registry has been used widely among health care professionals since its establishment in 2002. Survival rates for children and adolescents has been improved to 70%. This level of survival is at the acceptable level for an upper middle income country. This registry became a useful source for investigator and decision makers at national and international level.

Pediatric cancer registry in Turkey 2009-2019 (TPOG & TPHD).

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e22513-e22513
Author(s):  
M. Tezer Kutluk ◽  
Akif Yeşilipek
Keyword(s):  
Childhood Cancer ◽  
Children And Adolescents ◽  
Cancer Registry ◽  
Pediatric Cancer ◽  
Survival Rates ◽  
Age Distribution ◽  
Soft Tissue Sarcomas ◽  
Essential Element ◽  
Cancer Control ◽  
Middle Income

e22513 Background: The pediatric cancer registry is an essential element of pediatric cancer control. More than 200000 pediatric cancer cases annually are expected in children and adolescents aged 0-14 globally. The current efforts are focusing to improve the survival rates for children and adolescents in LMICs since the survival has already exceeded 80% in most of the high income countries. Here we present the most updated results of the pediatric cancer registry in Turkey. Methods: Pediatric cancer registry has been established by theTurkish Pediatric Oncology Group and Turkish Pediatric Hematology Association in 2002. The childhood cancer cases registered between 2009-2019 was included in this analysis. International Childhood Cancer Classification System was used for the classification. Essential demographic findings, ICD-O-3 morphology and topography codes were recorded for each case. Results: During the 11 years from 2009 to 2019, 17770 cases were registered. For all cases, median age was 6.8 year (0-17; M/F 9973/7789, 3 hermaphrodite, 5 unknown). Age distribution was 0-4 yrs, 40.3%; 5-9 yrs, 24.0%; 10-14 yrs, 23.6%; 15-19 yrs, 12.1%) The distribution of the tumor types were [number of cases, percentage of total, median age yrs, M/F]: Leukemia (4570, 25.7%, 5.5, 2633/1937); Lymphoma & other RES tumors (3477, 19.6%, 9.9, 2324/1150, 1 hermaphrodite & 2 unknown); CNS [brain & spinal] (2493, 14.0%, 6.9, 1363/1129, 1 unkown); Symphatetic system (1426, 8.0%, 2.4, 743/683); Retinoblastoma (348, 2.0%, 1.5, 204/144); Renal (905, 5.1%, 3.2, 435/469, 1 unknown); Liver (304, 1.7%, 1.8, 172/132); Malignant bone (1209, 6.8%, 12.6, 658/551); Soft tissue sarcomas (1221, 6.9%, 7.5, 703/518); Germ cell (1165, 6.6%, 8.8, 426/736, 2 hermaphrodite, 1 unknown); Carcinoma & other malignant epithelial (533, 3.0%, 13.8, 254/279); Other/non-specific malignant (119, 0.7%, 8.5, 58/61). Five year survival rate was found as 71.9%. Conclusions: The data is the most essential part of the cancer control.This registry has been used widely among professionals since its establishment in 2002. Survival rates for children and adolescents has been improved to 70%. This is at the acceptable level for the income level of Turkey which is classified as an upper middle income country. The registry is a useful source for investigators and decision makers at national and international level.

Pediatric cancer registry Turkey: 2009-2016 (TPOG & TPHD).

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. e22015-e22015 ◽  
Author(s):  
M. Tezer Kutluk ◽  
Akif Yesilipek
Keyword(s):  
Cancer Registry ◽  
Pediatric Cancer ◽  
Health Care Professionals ◽  
Survival Rates ◽  
Age Distribution ◽  
Soft Tissue Sarcomas ◽  
International Studies ◽  
Term Survival ◽  
Middle Income ◽  
Pediatric Hematology

e22015 Background: Each year 300.000 new cancer cases are expected in children & adolescents aged 0-19 years at global level. Although the long term survival rates have been improved to 85% in high income countries it is lower than this LMICs. Pediatric registries are essential for planning, evaluation, comparison for pediatric cancer care. This study focuses to pediatric cancer registry in Turkey. Methods: Turkish Pediatric Oncology Group and Turkish Pediatric Hematology Association established a WEB based cancer registry in Turkey in 2002. The registry information for 2002-2008 was presented earlier. This study, now, is including the distribution of pediatric cancer registry for the years of 2009-2016. International Childhood Classification System was used in classification. Basic demographic findings, ICD-O-3 morphology & topography codes were recorded for each cases. Results: During the 8 years from 2009 to 2016, 13123 pediatric cancer cases were recorded. For all cases, median age was 6.5 year (0–17; M/F 7356/5759, 3 hermaphrodite). Age distribution was 0–4 yrs, 41.3%; 5–9 yrs, 24.3%; 10–14 yrs , 23.2%; 15–19 yrs, 11.0%. 7 cases older than were registered (%0.1). The distribution of tumor types were [number of cases, percentage of total, median age years, M/F]: Leukemia (3751, 28.6%, 5.5, 2148/1603); Lymphoma and other RES tumors (2381, 18.1%, 9.5, 1613/763); CNS [brain & spinal] (1672, 12.7% , 7.13, 908/764); Symphatetic system (1053, 8.0% , 2.42, 550/503); Retinoblastoma (339, 2.6%, 1.33, 188/151); Renal (675, 5.1%, 3.33, 314/361); Liver (217, 1.7% , 1.75, 116/101); Malignant bone (892, 6.8 %, 12.55, 486/406); Soft tissue sarcomas (868, 6.6% , 7.21, 518/350); Germ cell (818, 6.2%, 7.58, 292/523); Carcinoma and other malignant epithelial (391, 3.0% , 13.60, 191/200); Other/non-specific malignant (66, 0.5%, 6.54, 32/34) tumors. Five year survival rate was found as 69.5 %. Conclusions: This registry since 2002 became a critical source for health care professionals in Turkey. Survival rates for children increased from 65% to 70% based on the latest information from this study. This is compatible with Turkey’s development level as an upper middle income country. This data also allows us to use the registry information at national and international studies.

Pediatric cancer registry in Turkey 2009-2020 (TPOG & TPHD).

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e22519-e22519
Author(s):  
M. Tezer Kutluk ◽  
Akif Yeşilipek
Keyword(s):  
Childhood Cancer ◽  
Cancer Registry ◽  
Pediatric Oncology ◽  
Pediatric Cancer ◽  
Survival Rates ◽  
Age Distribution ◽  
Soft Tissue Sarcomas ◽  
Cancer Control ◽  
Middle Income ◽  
Middle Income Countries

e22519 Background: Global actions on pediatric cancer control is targeting to improve the survival rates in low and middle income countries which already exceeded 80% in high income countries. Almost 300.000 pediatric cancer cases annually are expected in children and adolescents aged 0-14 globally. Pediatric cancer registry must be a priority within the pediatric cancer control programs. Here, we present the most updated results of the pediatric cancer registry in Turkey. Methods: Pediatric cancer registry has been established by the Turkish Pediatric Oncology Group and Turkish Pediatric Hematology Association in 2002. The childhood cancer cases registered between 2009-2020 was included in this analysis. International Childhood Cancer Classification System was used for the classification. Essential demographic findings, ICD-O-3 morphology and topography codes were recorded for each case. Results: During the 12 years from 2009 to 2020, 21792 cases were registered. For all cases, median age was 6.7 year (0-19; M/F 12198/9584, 4 hermaphrodite, 6 unknown). Age distribution was 0-4 yrs, 40.9%; 5-9 yrs, 23.7%; 10-14 yrs, 23.4%; 15-19 yrs, 12.0%) The distribution of the tumor types were [number of cases, percentage of total, median age yrs, M/F]: Leukemia (5208, 23.9%, 5.5, 3004/2204); Lymphoma & other RES tumors (4103, 18.8%, 9.8, 2733/1367, 1 hermaphrodite & 2 unknown); CNS [brain & spinal] (3269, 15.0%, 6.8, 1794/1474, 1 unkown); Symphatetic system (1794, 8.2%, 2.4, 933/861); Retinoblastoma (610, 2.8%, 1.4, 339/271); Renal (1079, 5.0%, 3.1, 524/553, 1 hermaphrodite & 1 unknown); Liver (376, 1.7%, 2.2, 216/160); Malignant bone (1448, 6.6%, 12.5, 787/661); Soft tissue sarcomas (1554, 7.1%, 7.6, 888/666); Germ cell (1461, 6.7%, 9.3, 547/910, 2 hermaphrodite, 2 unknown); Carcinoma & other malignant epithelial (745, 3.4%, 13.5, 362/383); Other/non-specific malignant (145, 0.7%, 7.9, 71/74). Five year survival rate was found as 72%. Conclusions: This registry shows the imrovement of survival rates to 72% in Turkey which is comparable with middle income countries. The pediatric cancer control community is investing on the control of childhood cancer for further improvement and this registry became a valuable source for pediatric oncology community at national and international level.

scholarly journals Implementing Yogyakarta Pediatric Cancer Registry for 16 years

2019 ◽  
Vol 59 (4) ◽  
pp. 188-94
Author(s):  
Sri Mulatsih ◽  
Adnina Hariningrum ◽  
Ignatius Purwanto ◽  
Rizki Oktasari
Keyword(s):  
Childhood Cancer ◽  
Cancer Registry ◽  
Pediatric Cancer ◽  
Lymphoblastic Leukemia ◽  
Myeloproliferative Disorders ◽  
Cancer Registries ◽  
Clinical Aspects ◽  
Cancer Registry Data ◽  
Kaplan Meier ◽  
Standard Risk

Background A hospital-based cancer registry can be used as a guide to decision-making. Considering the limited cancer registry data in the population, the Yogyakarta Pediatric Cancer Registry (YPCR) is one of the pioneers of hospital-based pediatric cancer registries in Indonesia. The YPCR was started in 2000 in Dr. Sardjito Hospital. Objective To describe the characteristics of childhood cancer and the outcomes by analyzing overall survival (OS) and event-free survival (EFS) based on data from Yogyakarta Pediatric Cancer Registry. Methods Data were collected from the YPCR for the period of 2000 to 2016. Childhood cancers were classified into 12 groups based on the 3rd edition International Classification for Childhood Cancer (ICCC). Incidence, frequency, and distribution of cases were grouped by sex, age, and patients’ place of residence. Incidence was further analyzed using SPSS software. Kaplan-Meier test was used to analyze OS and EFS. Results Within the study period, 2,441 children aged 0-18 years were diagnosed with cancer. The highest incidence was found in the 1-5-year age group. The most common diagnoses found were leukemia, myeloproliferative disorders, and myelodysplastic disease (58%); lymphoma and reticuloendothelial neoplasm (8%); retinoblastoma (6%); soft tissue and other extra-osseous sarcomas (5%); as well as neuroblastoma and other peripheral nervous cell tumors (5%). The OSs of acute lymphoblastic leukemia (ALL), high risk ALL (HR-ALL), and standard risk (SR-ALL) were 31.8%, 18.5%, and 43.9%, respectively. The EFSs of ALL, HR-ALL, and SR-ALL were 23.9%, 14.7%, and 32.4%, respectively. For solid tumors, the OS was 13.7% and EFS was 6.4%. Conclusion The number of new cases of childhood cancer has increased in the last few years. The Yogyakarta Pediatric Cancer Registry (YPCR), which serves as a hospital-based pediatric cancer registry, has an important role to evaluate clinical and non-clinical aspects of childhood cancer.

scholarly journals Pediatric Cancer Registry in Turkey (Turkish Pediatric Oncology Group & Turkish Pediatric Hematology Association)

2018 ◽  
Vol 4 (Supplement 2) ◽  
pp. 67s-67s
Author(s):  
M.T. Kutluk ◽  
M.A. Yeşilipek
Keyword(s):  
Cancer Registry ◽  
Pediatric Oncology ◽  
Pediatric Cancer ◽  
Cancer Care ◽  
Survival Rates ◽  
Oncology Group ◽  
Term Survival ◽  
Pediatric Hematology ◽  
Wide Range ◽  
Pediatric Oncology Group

Background: Each year more than 200,000 new cancer cases are expected in children & adolescents aged 0-14 years at global level. Although the long term survival rates have been improved to 85% in high income countries, it is still lower than this LMICs with a wide range around the world. Pediatric registries are critical for planning for pediatric cancer care. This study summarizes the update of pediatric cancer registry in Turkey. Aim: To analyze the pediatric cancer distribution through Turkish Pediatric Cancer Registry for the years of 2009-2017. Method: Turkish Pediatric Oncology Group and Turkish Pediatric Hematology Association established a Web based cancer registry in Turkey in 2002. The registry information for 2002-2008 was presented earlier. This study, now, is presents the distribution of pediatric cancers for the years of 2009-2017. International Childhood Classification System was used in classification. Basic demographic findings, ICD-O-3 morphology & topography codes were recorded for each cases. This is an update of the Turkish Pediatric Cancer Registry. Results: During the 9 years from 2009 to 2017, 14,769 pediatric cancer cases were recorded. For all cases, median age was 6.7 years (0-17 M/F 8318/6443, 3 hermaphrodite 5 unknown). Age distribution was 0-4 yrs, 40.8%; 5-9 yrs, 24.5%; 10-14 yrs, 23.3%; 15-19 yrs, 11.4%. The distribution of tumor types were [number of cases, percentage of total, median age years, M/F]: leukemia (4114, 27.9%, 5.5, 2366/1748); lymphoma and other RES tumors (2823, 19.1%, 9.6, 1904/914, 1 hermaphrodite 4 unknown); CNS [brain & spinal] (1950, 13.2%, 7.1, 1072/828); sympathetic system (1166, 7.9%, 2.4, 609/557); retinoblastoma (351, 2.4%, 1.4, 197/154); renal (736, 5.0%, 3.3, 345/391); liver (242, 1.6%, 1.8, 132/110); malignant bone (965, 6.5%, 12.6, 527/438); soft tissue sarcomas (991, 6.7%, 7.4, 580/411); germ cell (911, 6.2%, 8.2, 331/577, 2 hermaphrodite, 1 unknown); carcinoma and other malignant epithelial (436, 3.0%, 13.6, 212/224); other/nonspecific malignant (84, 0.6%, 7.1, 43/41) tumors. Five year survival rate was found as 67.8%. Conclusion: Registry provides the essential information for planning the pediatric cancer care. This registry became a critical source for health care professionals in Turkey since beginning. Survival rates for children increased to 67.8% based on this study. This is compatible with the survival rates from other upper middle income countries. This data also allows the comparison of the national data with the national and international studies. Investment on the pediatric cancer registry is one of the first steps of investments on pediatric cancer care.

Results of a pre-implementation analysis of Ethiopia’s National Pediatric Cancer Registry

2020 ◽  
pp. 107815522098005
Author(s):  
Kaitlyn M Buhlinger ◽  
Jared Borlagdan ◽  
Bemnat Agegnehu ◽  
Atalay M Fentie ◽  
Adam T Bernstein ◽  
...  
Keyword(s):  
Cancer Registry ◽  
Pediatric Cancer ◽  
Survival Rates ◽  
Hospital Staff ◽  
Cancer Registries ◽  
World Health ◽  
Data Set ◽  
Summary Sheet ◽  
National Mortality ◽  
Health Organization

In Ethiopia, cancer accounts for about 5.8% of total national mortality, with an estimated annual incidence of cancer of approximately 60,960 cases and an annual mortality of over 44,000 persons. This is likely an underestimation. Survival rates for pediatric malignancies are likewise suboptimal although exact figures are unknown since a national cancer registry is unavailable. The World Health Organization (WHO) provides recommendations for the creation of cancer registries to track such data. Here we describe our pharmacist-led, pre-implementation assessment of introducing an enhanced national pediatric cancer registry in Ethiopia. Our assessment project had three specific aims around which the methods were designed: 1) characterization of the current spreadsheet-based tool across participating sites, including which variables were being collected, how these variables compared to standards set by the WHO, and a description of how the data were entered and its completeness; 2) assessment of the perceptions of an enhanced registry from hospital staff; and 3) evaluation of workflow gaps regarding documentation. The hospital staff and leadership have generally positive perceptions of an enhanced pediatric cancer registry, which were further improved by our interactions. The workflow assessment revealed several gaps, which were addressed systematically using a three-phase implementation science approach. The assessment also demonstrated that the existing spreadsheet-based tool was missing WHO-recommended variables and had inconsistent completion due to the workflow gaps. A pediatric oncology summary sheet will be implemented in upcoming trips in patient charts to better summarize the patients’ journey starting from diagnosis. This document will be used by the data clerks in an enhanced-spreadsheet to have a more complete data set.

scholarly journals Cutaneous Tumors in Swiss Dogs: Retrospective Data From the Swiss Canine Cancer Registry, 2008–2013

2018 ◽  
Vol 55 (6) ◽  
pp. 809-820 ◽  
Author(s):  
Ramona Graf ◽  
Andreas Pospischil ◽  
Franco Guscetti ◽  
Daniela Meier ◽  
Monika Welle ◽  
...  
Keyword(s):  
Mast Cell ◽  
Nova Scotia ◽  
Cancer Registry ◽  
Soft Tissue Sarcomas ◽  
Population Data ◽  
Cancer Registries ◽  
Mast Cell Tumors ◽  
Melanocytic Tumors ◽  
Canine Cancer ◽  
Tumor Types

Data collected in animal cancer registries comprise extensive and valuable information, even more so when evaluated in context with precise population data. The authors evaluated 11 740 canine skin tumors collected in the Swiss Canine Cancer Registry from 2008–2013, considering data on breed, sex, age, and anatomic locations. Their incidence rate (IR) per 100 000 dogs/year in the Swiss dog population was calculated based on data from the official and mandatory Swiss dog registration database ANIS. The most common tumor types were mast cell tumors (16.35%; IR, 60.3), lipomas (12.47%; IR, 46.0), hair follicle tumors (12.34%; IR, 45.5), histiocytomas (12.10%; IR, 44.6), soft tissue sarcomas (10.86%; IR, 40.1), and melanocytic tumors (8.63%; IR, 31.8) with >1000 tumors per type. The average IR of all tumor types across the 227 registered breeds was 372.2. The highest tumor incidence was found in the Giant Schnauzer (IR, 1616.3), the Standard Schnauzer (IR, 1545.4), the Magyar Vizsla (IR, 1534.6), the Rhodesian Ridgeback (IR, 1445.0), the Nova Scotia Duck Tolling Retriever (IR, 1351.7), and the Boxer (IR, 1350.0). Mixed-breed dogs (IR, 979.4) had an increased IR compared to the average of all breeds. Previously reported breed predispositions for most tumor types were confirmed. Nevertheless, the data also showed an increased IR for mast cell tumors and melanocytic tumors in the Nova Scotia Duck Tolling Retriever and for histiocytomas in the Flat Coated Retriever. The results from this study can be taken into consideration when selecting purebred dogs for breeding to improve a breed’s health.

Extended ray resection for sarcoma of the hand: long-term survival and functional results

2019 ◽  
Vol 45 (2) ◽  
pp. 160-166 ◽  
Author(s):  
Farhad Farzaliyev ◽  
Hans-Ulrich Steinau ◽  
Halil-Ibrahim Karadag ◽  
Alexander Touma ◽  
Lars Erik Podleska
Keyword(s):  
Soft Tissue ◽  
Survival Rates ◽  
Soft Tissue Sarcomas ◽  
Functional Results ◽  
Contralateral Side ◽  
Level Of Evidence ◽  
Term Survival ◽  
Kaplan Meier

In this retrospective study, we analysed the long-term oncological and functional results after extended ray resection for sarcoma of the hand. Recurrence-free and overall survivals were calculated using the Kaplan–Meier method. The function of the operated hand was assessed with the Michigan Hand Questionnaire and compared with the contralateral side. Extended ray resection was performed in 25 out of 168 consecutive patients with soft-tissue and bony sarcomas of the hand. The overall 5- and 10-year, disease-specific survival rates were 86% and 81%, respectively. Local recurrences were observed in two patients. The Michigan Hand Questionnaire score for the affected hand at follow-up in nine patients was 82 points versus 95 for the healthy contralateral hands. We conclude that extended ray resection of osseous sarcomas breaking through the bone into the soft tissue or for soft tissue sarcomas invading bone is a preferable alternative to hand ablation when excision can be achieved with tumour-free margins. Level of evidence: III

Neuroblastoma metastatic to the central nervous system: Survival analyses from the German Childhood Cancer Registry and the literature.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. 10555-10555
Author(s):  
Frank Berthold ◽  
Marc Hömberg ◽  
Ole Baadsgaard
Keyword(s):  
Central Nervous System ◽  
Nervous System ◽  
Childhood Cancer ◽  
Cancer Registry ◽  
Natural Course ◽  
Curative Intent ◽  
Term Survival ◽  
The Central Nervous System ◽  
Inclusive Analysis ◽  
German Childhood Cancer Registry

10555 Background: Therapeutic innovation has resulted in an overall decline in childhood neuroblastoma (NB) mortality; however, metastatic NB to the central nervous system (CNS NB), which has emerged as a sanctuary site for NB metastases, remains difficult to treat and is typically fatal. The objective of this study was to describe the natural course of CNS NB. Methods: Data were sourced from a custom query of the German Childhood Cancer Registry (GCCR) and from the literature. Survival statistics were prepared from a diverse, thus generalizable, pool of CNS NB patients. Data are presented as secondary event-free and overall survival (EFS and OS) after diagnosis of first CNS recurrence from initial high-risk NB. Results: The GCCR query identified 85 patients with CNS NB diagnosed from 1990–2010, including 57 with isolated CNS disease. The median (95% confidence) EFS and OS times were 2.6 (1.5–3.8) and 4.7 (2.1–7.2) months, respectively, for all CNS NB patients, and 2.8 (1.4–4.1) and 6.8 (2.1–11.5) months, respectively, for isolated CNS NB patients. Secondary OS at 12, 18, and 36 months was 29.4%, 18.8%, and 8.2%, respectively, for all CNS NB patients, and 35.1%, 22.8%, and 12.3%, respectively, for isolated CNS NB patients. Thirteen publications were selected with 83 patients treated from 1979–2013. In addition to an inclusive analysis, a restricted analysis was performed, excluding patients who did not receive therapy with curative intent, to assess survival after therapeutic intervention. Median OS (95% confidence) was 5.6 (3.0–8.0) and 8.7 (5.8–11.0) months in the inclusive and restricted analyses, respectively. The proportion of patients surviving 12, 18, and 36 months at reporting were 24%, 12%, and 3.6%, respectively, for the inclusive population, and 33%, 17%, and 5%, respectively, for the restricted population. Conclusions: An assessment of the natural course of CNS NB from two sources arrived at similar conclusions with respect to overall and long-term survival. In general, median secondary OS is < 6 months and < 10% of patients survive 36 months. The findings were consistent across geographic regions and have not changed appreciably in 4 decades.

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