Document(s) 28 de 31

Introduction

Cancer registration can trace its origins to the first decade of the 20th century, when surveys measuring the point prevalence of cancer were reported from a number of European countries. Permanent registration systems were implemented in Hamburg in 1926, Mecklenburg in 1937 – both discontinued during World War II – Massachusetts in 1927 and Connecticut in 1935. The first national survey on a significant sample of the US population was carried out in 1937–38. By the end of the late 1940s, population-based registries and the survey system (10 metropolitan areas in the USA) had solved most technical problems, and the concepts have been widely used ever since.

The first experiences of using nominal rosters of cancer patients for analytical studies or for linkage with other registries occurred in the late 1940s. Epidemiologists working on those registries realized that incidence and mortality statistics should not be considered as alternatives: the latter are generally valuable, but the former can also provide information on treatment and follow-up. An expert report for the World Health Organization (WHO) concluded that:¹

the collection of accurate statistics of cancer incidence and mortality among different … people and … countries may lead to important indications for … studies … [whereas] the information [provided by mortality statistics] … is becoming increasingly inadequate, owing to growing numbers of patients successfully treated and thus not registered in the statistics of death [Thus], we … make the following suggestions:

1. Great benefit would follow the collection of data about cancer patients from as many different countries as possible.
   
   
2. Such data should be recorded on an agreed plan so as to be comparable.
   
   
3. Each nation should have a central registry to arrange for recording and collection of such data.
   
   
4. There should be an international body whose duty should be to correlate the data and statistics obtained in each country.

In 1950, the WHO created a Subcommittee on the Registration of Cases of Cancer. Within a few years, the Nordic countries, the UK and Canada launched programmes that led to national coverage of registration. The model followed in the USA was different: no national coverage was attempted, and instead a number of county- or state-based registries were created. The surveys on samples of the population were converted in the Surveillance, Epidemiology and End Results (SEER) programme, which produces incidence and survival rates broken down by ethnic groups.

The first worldwide analysis was published in 1966 with the title Cancer Incidence in Five Continents.² This marked the beginning of a series of publications appearing at five-year intervals, supervised by the International Union Against Cancer (UICC), the International Agency for Research on Cancer (IARC) and the International Association of Cancer Registries (IACR). The data were not simply and passively accepted, but were revised and controlled.^2–4 Two by-products of this strategy have been a worldwide standardization of the activity of registration and the provision through the IARC of technical advice to developing cancer registries.

In 30 years, the number of countries with cancer registries nearly doubled and there was a fivefold increase in both the number of active cancer registries and the total population served by registration (Table 26.1).4 These increases were concentrated in industrialized countries, whereas in developing countries there was a substantial decrease in registration, attributable to the political and economic situation,⁵ leading to the inequalities reported in Table 26.2 and displayed in Figures 26.1 and 26.2.

In the early 1980s, it became apparent that population-based survival rates of cancer patients could be used as an indicator of the quality of cancer care in a given area and that registries could play a major role. The first large-scale international cooperative study, the EUROCARE project, published its first results in 1995,⁶ and aimed to increase cooperation between epidemiologists and clinicians in continental Europe and to perform a systematic follow-up of the living status of the registered individuals.

Cancer registries have benefited tremendously from the use of databases and electronic data transfer. The use of the Internet is thus a natural evolution. Most registries were publishing information online in the early 1990s, and many have already switched to web-based data entry interfaces.

Figure 26.1 Individual countries: coverage by cancer registries 1997⁴

Cancer in children

Cancer is very rare in childhood – it is predominantly a disease of elderly people. In industrialized countries, about 1 in 200 (0.5%) of all cancers occurs in children aged under 15 years. The incidence rate is typically 110–150 per million children per year, equivalent to a risk of around 1 in 500 during the first 15 years of life. Nevertheless, cancer accounts for about 20% of all deaths in children aged 1–14 years, making it the second most common cause of death in children in most of the world (the first is death due to external causes) and the most common cause of death by disease, with the exception of Africa and some Asian countries.

Figure 26.2 Cancer registry coverage: geographical coverage (percentage of total population) of cancer registries by region⁴

Cancer in children is often not preventable. Prenatal factors are considered to affect the incidence of tumours in children under the age of 5 years. It is generally accepted that cancer results from genetic changes. The carcinogenic process in children is much shorter than in adults. Childhood cancer incidence rates are highest during infancy, so it is reasonable to assume that many paediatric cancers result from aberrations in early developmental stages and in utero.

An increased risk of childhood cancers has been reported to be associated with certain genetic conditions or syndromes such as chromosomal abnormalities, DNA-repair disorders, congenital anomalies, hereditary immune deficiency states and other hereditary syndromes. Racial differences have been observed in childhood tumours, even within industrialized countries. A peak incidence in acute lymphoblastic leukaemia (ALL) usually occurs between the ages of 2 and 3 years in white American children and from 1 to 4 years in European children, but not among African–Americans. Ewing’s sarcoma is another well-established example of a cancer with racial differences, with the lowest incidence rate in black children (African or American).⁷

Overall, childhood cancer is about 20% more common among boys than among girls. The male predominance is greater for lymphomas, liver tumours and nasopharyngeal carcinoma, and less marked for leukaemia, brain tumours, neuroblastoma and soft tissue sarcomas. Boys and girls have a similar incidence of retinoblastoma and Wilms’ tumour. The incidence in girls is only greater for extragonadal germ cell tumours, malignant melanoma, and adrenal cortex and thyroid carcinomas.

There are also marked variations between populations in the incidence of specific types of childhood cancers. Nearly one-third of all childhood neoplasms are leukaemias. International variation occurs in the rate of ALL, and the higher incidence of ALL in early childhood has usually been associated with higher levels of socioeconomic status, suggesting that environmental factors play a role. Although a considerable number of environmental or exogenous factors have been suggested as risk factors for childhood cancers, only a few have been proven, and they are mostly infectious agents, including Epstein–Barr virus, hepatitis B virus, human immunodeficiency virus and human herpesviruses. These infections are probably responsible for the international variation in the incidence of some childhood cancers, such as lymphoma, nasopharyngeal carcinoma, hepatic cancer and Kaposi’s sarcoma. In addition, some parasitic infections have been implicated, particularly malaria in tropical Africa, acting as a cofactor for Burkitt’s lymphoma, and schistosomiasis in Egypt, causing bladder cancer.⁷

The EUROCARE collaboration has revealed considerable variation in survival between European countries,⁸ but, unlike those for adults, the survival rates of children with cancer in Western Europe are similar to those in the USA.⁹ In the developing countries, where 80% of the world’s children with cancer live, they are often diagnosed too late or not diagnosed at all and, without access to life-saving treatment, more than one in two of these children diagnosed with cancer will die.

The increases in survival rates occurred during a period of great technical advances in childhood cancer treatment, but there were also major changes in referral patterns. At one time, most children with cancer were treated at local hospitals, there were few specialists in paediatric oncology, and opportunities for participation in collaborative studies of treatment were limited. Treatment has gradually become more centralized, and more children have been entered in national and international clinical trials and studies.¹⁰ For several types of cancer, survival has been found to be higher among children who were treated at specialist centres or who were entered in national or international clinical trials.

As a consequence of the improved survival rates described above, the number of adult survivors of childhood cancer has increased substantially (Figure 26.3). In 1961, there were only about 15 survivors in Britain aged 30 or above, and none above 40, while in 2000, there were over 26 000 survivors, of whom almost 7000 (about 25%) were aged over 30 years. In 1971, there were 5500 survivors, with over 1000 above age 20 and 100 aged 30 or above. In 1981, there were nearly 3000 survivors aged 20 and above, but fewer than 100 of them were aged over 40 years, while in 2000, almost 2500 (almost 20% of those aged 20 and above) were aged over 40 years. Eventually, more than 1 in 1000 adults of all ages will be survivors of childhood cancer.¹¹

Cancer information on the Internet

The Internet has become an increasingly common source of medical information for patients with cancer. For example, over 50% of adults in the USA have searched online for health information and 80% of all US Internet users have searched online for at least one major health topic.¹²

Use of the Internet to access cancer information is related to age (being more common in those aged under 60 years), higher income, higher education and being white.¹³ However, there has been little research on Internet cancer information use among minority racial/ethnic groups in the USA and Western Europe, or in populations of developing countries, or on the appropriateness of the websites available to such populations.^12,13 Many cancer organizations have created patient-centred web-sites to provide comprehensive information about specific cancers, but most of the information available is in English, limiting its use for non-speakers.

Figure 26.3 Number of (past or current) childhood cancer patients (by age group) alive at the end of each year in the UK, 1961–200011

A study of cancer patients’ self-reported attitudes to the Internet came to the following conclusions:¹⁴

• Patients are comfortable giving as well as receiving cancer information and support online; they are also comfortable in evaluating it.
  
  
• They are interested in the experiences of other patients and derive benefit by interacting with them directly, through venues such as discussion boards and email lists or, indirectly, through activities such as reading biographies.
  
  
• They perceive better outcomes after using online health information and support.
  
  
• Cancer patients have a certain level of trust in online information, primarily for information obtained from established reputable sources such as studies in journals and advice given by medical doctors; they also trust websites endorsed by health authorities.
  
  
• They are confident in their ability to evaluate information, including comprehension of research reports.
  
  
• They display a healthy scepticism when presented with the option of divulging personal health information. However, some patients are willing to provide email addresses and, if they receive personalized information, they are comfortable in disclosing their identity.

Another study evaluating cancer patients’ and caregivers’ interests about the Internet indicated that most patient and caregiver respondents were interested in Internet-based cancer-related services such as information related to treatment (80%), conversations with physicians via the Internet (70%) and online support groups (65%). In addition, respondents reported that they would be likely to use such services (70%) and were interested in home health care services delivered via PCs (60%). No differences were found between ethnic groups, geographical settings or patient status (patient versus caregivers) on these variables. Minorities, older individuals and less-educated individuals were less likely to have knowledge of and to have used the Internet.¹⁵

In the last few years, there have been efforts to improve online cancer information quality. Good examples include the International Cancer Information Service (established in 2001), the American Society of Clinical Oncology (ASCO) website People Living with Cancer (launched in 2002) and the Oncopediatria.org portal¹⁶ (launched in 2004).

Online information about childhood cancer and web-based initiatives on the subject are less common, even in industrialized countries. This may be a reflection of the lower incidence of the disease on this age group or may be a misconception about the similarity of the disease between adults and children.

International initiatives

While most international initiatives that focus on paediatric oncology are from cooperative groups in Western Europe or North America, there are some good examples that focus on developing countries. These include the following.

SLAOP

The Latin American Society of Paediatric Oncology (SLAOP) provides information for general paediatricians and paediatric oncologists by publishing articles, news and presentations in paediatric and evidence-based oncology on its website.¹⁷ SLAOP is also developing a Latin-American Paediatric Oncology Registry, and has launched the Latin-American Paediatric Promyelocytic Leukaemia Registry, a web-based registry available through its website.

St Jude Children’s Research Hospital

The St Jude’s Hospital in Tennessee has an International Outreach programme with the object to improve the survival rates of children with catastrophic illnesses worldwide, through the transfer of knowledge, technology and organizational skills. This is achieved through twinning programmes and through two websites: Cure4Kids¹⁸ and POND4Kids.¹⁹

The Cure4Kids website was launched in October 2002 and provides medical education for physicians, nurses, scientists and health care workers in countries with limited resources who treat children with catastrophic diseases. The main functions are:

• online education about catastrophic childhood illnesses
  
  
• collaborative work spaces for document sharing and online meetings; several countries, including Brazil, Lebanon, Morocco, Guatemala, El Salvador, Honduras and Mexico, participate in these international meetings
  
  
• access to consultation and mentoring by staff of St Jude’s Hospital
  
  
• technology and training for better management of patient information.

The core of Cure4Kids is an online digital library of reference material, a discussion area for exchange of advice and information between doctors, and access to online seminars and lectures. The website is also used to host live meetings via web conferencing (video and voice-over-IP).¹⁸ In September 2007, there were 11 490 registered users in 157 countries.

The Paediatric Oncology Networked Database (POND4Kids) is an online, multi-lingual database for paediatric haematology/oncology patients. The aim is to improve the care of paediatric oncology patients in countries with limited resources by the exchange of information and experience among oncologists who practise in a similar medical environment. The major objectives of POND4Kids are to:

• store patient data for easy retrieval and analysis in a way that ensures quality control
  
  
• provide uniform data collection to facilitate comparison of information among centres
  
  
• provide a single tool for data storage and retrieval to facilitate training of data managers
  
  
• develop a multilingual online system that is available to users at no cost.

POND4Kids is hosted on a web server and is divided into several virtual sites. Clinicians at different POND4Kids sites can share information about individual patients, groups of patients with the same disease or all patients. Shared records have personal identifiers removed, but retain a unique POND identification number. Information sharing facilitates analysis by colleagues of specific diseases treated at multiple centres in low-income countries. Information can also be shared with international experts to assist with analysis and quality improvement.

Ten centres in nine countries (seven in Central America, two in Morocco and one in Jordan) currently use the POND4Kids website. In the first two years of operation (2004–2006), over 9000 patient records were entered into POND4Kids.²⁰ Many paediatric oncology services in developing countries have adopted these websites for registering and discussing their patients, instead of developing a website of their own.

SIOP

The International Society of Paediatric Oncology (SIOP) provides information for professionals by publishing best practice guidelines on its website²¹ and by making available the SIOP educational books and conference lectures on the Cure4Kids website.

International agencies

The IARC publishes the International Classification of Childhood Cancer,²² currently in its third revision, and adopted worldwide in childhood cancer registries. The IARC also publishes the Cancer Incidence in Five Continents report that is updated every 5 years,^2–4 and publishes cancer registration manuals and papers on the social inequalities of cancer. Almost all publications are available at the agency’s website.²³

The IACR has designed a suite of computer programs to meet the needs of population-based cancer registries in developing countries. The software is in its fourth version, named CanReg4, and can be used in a Windows-based network environment. It is available in English, Spanish, French, Italian, Turkish, Chinese, Thai, Arabic and Farsi. The software is free and is available at the IACR website.²⁴

Twinning programmes

Twinning programmes are partnerships between institutions in industrialized countries and those in developing countries with the goal of improving survival rates among children with cancer. These programmes have reduced the rates of abandonment of treatment, relapse and death due to toxic effects of treatment. The investments that they have attracted have led to improvements in access to treatment and hospital infrastructure. The best results have been obtained when local oncologists were recruited as programme directors and asked to promote the idea of a strong paediatric oncology unit among their peers and to coordinate the training of providers.²⁵

Most twinning programmes have a telemedicine component, usually videoconferencing, web-based case report forms or continuing medical education (CME). Examples are the programme between the King Hussein Cancer Centre (KHCC) in Amman, Jordan and the Hospital for Sick Children in Toronto, Canada in paediatric neurooncology²⁶ and the MISPHO Consortium initiatives in Central America.²⁷

Online childhood cancer registries in developing countries

Although online cancer registries have became more common in the last few years, only a few childhood cancer registries have been implemented by developing nations, and even fewer with a web-based interface. Examples include the following.

Brazil

The Oncopediatria portal was launched in 2004 and is a web-based system that offers services and information on paediatric cancer.¹⁶ It maintains a secure online patient registry, a web-based bone marrow transplant registry tool and online cooperative treatment protocols for the Brazilian Society of Paediatric Oncology. It is part of a national telemedicine network of universities, research institutes and medical institutions that has been established in Brazil to support distance medical practice in oncology, called ONCONET.^28–30

The main objectives are:

• to improve the information flow in research programmes and cooperative treatment protocols
  
  
• to disseminate and harmonize treatments through the use of protocols that produce the highest cure rates
  
  
• to establish the basis for a national demographic record of paediatric cancer
  
  
• to make available statistics, demographic data and analyses of the results of treatments using the protocols.

The system is hosted on clusters of computers. It is based on open-source software, designed to provide high performance, fault tolerance and high availability.

Some of the Brazilian Society’s cooperative protocols have been implemented. The first online treatment protocol targets the treatment of high-risk neuroblastoma.²⁹ A protocol for multiple subtypes of non-Hodgkin’s lymphoma and another for paediatric bone marrow transplantation³⁰ are also available. In these protocols, much of the data is textual, but parts of the record are medical images. The system allows images to be stored in several common image formats such as JPEG and DICOM (digital imaging and communications in medicine).

In June 2007, there were 310 registered paediatric oncologists from 53 out of 58 treatment centres in 23 states; there were 7000 registered patients.

Argentina

The Argentinean Paediatric Oncology Hospital Registry (ROHA) was established in 2000 using the WHO/IARC standards for cancer registration. It registers children with solid and haematological malignancies. Registered data can be consulted online at the ROHA website.³¹

Eastern Europe

The Automated Childhood Cancer Information System (ACCIS) is a project developed by the IARC and supported by the European Commission, with the objectives of collecting, presenting, interpreting and disseminating data on childhood cancer in Europe. The ACCIS database contains some 160 000 records on childhood and adolescent cancer cases registered over the last 30 years in 78 European population-based cancer registries, covering 2.6 billion person-years. The Eastern European countries with information stored in this database are Belarus, Estonia, Hungary, Slovakia, Slovenia and Turkey.³²

Belarus

The childhood population-based cancer registry of the Republic of Belarus was created in August 1999 and registered cases retrospectively to the year 1989. It was created as one of the international health care initiatives after the Chernobyl disaster. Consolidated data can be consulted online at the registry’s website.

Serbia

The Childhood Cancer Registry of Central Serbia was created by the Institute of Public Health of Serbia ‘Dr Milan Jovanović Batut’. The registry has consolidated data from 1997 to 2005, available online at the Institute’s website.³⁴

India

The non-governmental organization South Asian Marrow Foundation –‘Matchpia’ – has a web-based initiative named Project India,³⁵ which launched the United South Asian Donor Registry (USADR), an online bone marrow donor registry. This is probably India’s largest registry. The foundation also performs matching between donors and patients, including those with paediatric cancer.

Singapore

The Singapore Childhood Cancer Registry (SCCR) was established in September 1997 under the auspices of the Paediatric Oncology Group (Singapore), and registers all children, aged 18 years and below, who have been diagnosed with haematological or solid malignancies. Physicians voluntarily register the patients through a secure web-based form on the registry’s website.³⁶

Paediatric oncology web-based information

Most childhood cancer information websites from developing countries belong to parents’ associations and support groups. The information content on these websites is usually focused on the activities and objectives of the organization, and there is limited information on the most common types of childhood cancer and only general information about therapy options. For more complete information, there are usually links to North American, local governmental or international websites. There are a few exceptions to this rule, which are mentioned below.

Government websites usually offer general cancer information targeting adults with cancer. In Brazil and South Africa, local childhood cancer medical associations and some treatment centres have websites with more detailed cancer information for parents and professionals.

Latin America

The Brazilian National Cancer Institute (INCA) has a subsection of its website³⁷ dedicated to childhood cancer information for parents and professionals, including statistics, treatment guidelines, early detection and an overview of the cancer types. There are also many cancer-related publications available for download.

Over 20 childhood cancer support groups in Brazil offer websites with disease information for the general public. For example, the Brazilian Lymphoma and Leukaemia Association (ABRALE) has a website³⁸ that offers detailed information on leukaemia and lymphoma for parents and health professionals. It has a subsection dedicated to cancer in children. Distance learning tools, legal support information, forums and downloadable information booklets are also available.

The Oncopediatria website¹⁶ from Brazil has an open information section for parents and health professionals that includes cancer information, articles, summaries of treatment studies and a biweekly newsletter.

The Organization of Parents of Children with Cancer and Related Diseases (OPNICER) from Colombia offers on its website³⁹ legal information for parents and a roadmap of the challenges faced by children and parents from cancer diagnosis to cure.

The Natalí Dafne Flexer Association from Argentina offers detailed information for parents, patients, volunteers and professionals, as well as articles, downloadable booklets and other childhood cancer resources on its website.⁴⁰

Eastern Europe

The Romanian Association of the Parents with Cancer and Leukaemia Ill Children (P.A.V.E.L.) has an information section on its website⁴¹ with diagnostic information, nutritional orientation and support information for parents and professionals, as well as best practice guidelines for doctors.

Asia

The Children’s Cancer Foundation of Singapore offers detailed information and resources for parents and teachers, and downloadable booklets in three languages on its website.⁴²

Africa

The South African Children’s Cancer Group (SACCSG) has a web portal⁴³ with information for general practitioners on early diagnosis of cancer. It also provides information and support for parents, in partnership with the Childhood Cancer Foundation of South Africa.

Conclusion

The field of oncology is vast, and knowledge is increasing rapidly. The main gap between industrialized and developing countries in this field is not the availability of the newest medications; rather, it is differences in the information about the types of cancer afflicting the population and on the best ways to treat them. The increases that have occurred in the cure rate of children with cancer are mainly due to the use of better combinations of existing drugs, rather than the use of new ones.

The Internet offers great potential for bridging the knowledge gap. The instant availability of up-to-date information for medical practitioners can increase the speed of diagnosis. The availability of accurate cancer profiles in each country, resulting from work done by the national registries, can guide professionals to the most likely diagnosis, and help governments and private initiatives to direct their resources to treat cancer more effectively.

Acknowledgements

I thank Adilson Yuuji Hira, Marcelo Knörich Zuffo and the staff of the Telemedicine and Bioinformatics Unit from the Laboratory of Integrated Systems of the University of São Paulo for their advice and support.

References

¹ Clemmesen J. Statistical studies in the aetiology of malignant neoplasms. Acta Pathol Microbiol Scand Suppl 1974; 247: 1–266.

² Doll R, Payne P, Waterhouse J, eds. Cancer Incidence in Five Continents: A Technical Report. New York: Springer, 1966.

³ Parkin DM, Whelan SL, Ferlay J, Raymond L, eds. Cancer Incidence in Five Continents, Volume VII. Lyon: IARC, 1997.

⁴ Parkin DM, Whelan SL, Ferlay J et al, eds. Cancer Incidence in Five Continents, Volume VIII. Lyon: IARC, 2002.

⁵ International Agency for Research on Cancer. Biennial Report 1994–95. Lyon: IARC, 1995.

⁶ Berrino F, Sant M, Verdecchia A et al, eds. Survival of Cancer Patients in Europe: The EUROCARE Study. Lyon: IARC, 1995.

⁷ Stiller CA. Epidemiology and genetics of childhood cancer. Oncogene 2004; 23: 6429–44.

⁸ Gatta G, Corazziari I, Magnani C et al. Childhood cancer survival in Europe. Ann Oncol 2003; 14(Suppl 5), v119–27.

⁹ Gatta G, Capocaccia R, Coleman MP et al. Childhood cancer survival in Europe and the United States. Cancer 2002; 95: 1767–72.

¹⁰ Mott MG, Mann JR, Stiller CA. The United Kingdom Children’s Cancer Study Group – the first 20 years of growth and development. Eur J Cancer 1997; 33: 1448–52.

¹¹ Children’s Cancer and Leukaemia Group. Available at: www.ukccsg.org.uk.

¹² Fogel J. Internet use for cancer information among racial/ethnic populations and low literacy groups. Cancer Control 2003; 10(Suppl 5): 45–51.

¹³ Nguyen KD, Hara B, Chlebowski RT. Utility of two cancer organization websites for a multiethnic, public hospital oncology population: comparative cross-sectional survey. J Med Internet Res 2005; 7: e28.

¹⁴ LaCoursiere SP, Knobf MT, McCorkle R. Cancer patients’ self-reported attitudes about the Internet. J Med Internet Res 2005; 7: e22.

¹⁵ Monnier J, Laken M, Carter CL. Patient and caregiver interest in internet-based cancer services. Cancer Pract 2002; 10: 305–10.

¹⁶ Oncopediatria. Available at: www.oncopediatria.org.br.

¹⁷ SLAOP. Available at: www.slaop.org.

¹⁸ Cure4Kids. Available at: www.cure4kids.org/ums/home.

¹⁹ POND4Kids. Available at: www.pond4kids.org.

²⁰ Quintana Y, Howard S, Norland M et al. Pond4Kids – a multi-site online pediatric oncology research database for collaborative protocol research. AMIA Annu Symp Proc 2005: 1090.

²¹ International Society of Paediatric Oncology. Available at: www.siop.nl.

²² Steliarova-Foucher E, Stiller C, Lacour B, Kaatsch P. International Classification of Childhood Cancer, third edition. Cancer 2005; 103: 1457–67.

²³ International Agency for Research on Cancer. Available at: www.iarc.fr.

²⁴ International Association of Cancer Registries. Available at: www.iacr.com.fr.

²⁵ Ribeiro RC, Pui CH. Saving the children – improving childhood cancer treatment in developing countries. N Engl J Med 2005; 352: 2158–60.

²⁶ Qaddoumi I, Mansour A, Musharbash A et al. Impact of telemedicine on pediatric neuro-oncology in a developing country: the Jordanian-–Canadian experience. Pediatr Blood Cancer 2007; 48: 39–43.

²⁷ Howard SC, Marinoni M, Castillo L et al. Improving outcomes for children with cancer in low-income countries in Latin America: a report on the recent meetings of the Monza International School of Pediatric Hematology/Oncology (MISPHO) – Part I. Pediatr Blood Cancer 2007; 48: 364–9.

²⁸ Hira AY, Lopes TT, de Mello AN et al. Establishment of the Brazilian telehealth network for paediatric oncology. J Telemed Telecare 2005; 11(Suppl 2): 51–2.

²⁹ Hira AY, Lopes TT, de Mello AN et al. Web-based patient records and treatment guidelines in paediatric oncology. J Telemed Telecare 2005; 11(Suppl 2): 53–5.

³⁰ de Mello AN, Trautenmüller P, Hira AY et al. Development of a Web-based bone marrow transplant registry system. J Telemed Telecare 2006; 12(Suppl 3): 64–6.

³¹ Registro Oncopediátrico Hospitalario Argentino (ROHA). Available at: www.roha.org.ar.

³² Steliarova-Foucher E, Kaatsch P, Lacour B et al. Quality, comparability and methods of analysis of data on childhood cancer in Europe (1978–1997): report from the Automated Childhood Cancer Information System project. Eur J Cancer 2006; 42: 1915–51.

³³ Child Health International Foundation. A Childhood Cancer Registry for Belarus. Available at: www.pghfree.net/~chif/registry.html.

³⁴ Institute of Public Health of Serbia ‘Dr Milan Jovanović Batut’. Available at: www.batut.org.yu/english.html.

³⁵ Matchpia. Available at: www.matchpia.org.

³⁶ Singapore Childhood Cancer Registry. Available at: sccr.pogs.org.sg.

³⁷ Instituto Nacional de Câncer (INCA). Available at: www.inca.gov.br.

³⁸ Associação Brasileira de Linfoma e Leucemia (ABRALE). Available at: abrale.org.br.

³⁹ Organización de Padres de Niños con Cáncer y Enfermedades Relacionadas (OPNICER). Available at: www.opnicer.org.

⁴⁰ Fundación Natalí Dafne Flexer. Available at: www.fundacionflexer.org.

⁴¹ Romanian Association of the Parents with Cancer and Leukaemia Ill Children (P.A.V.E.L.). Available at: www.asociatiapavel.home.ro.

⁴² Children’s Cancer Foundation. Available at: www.ccf.org.sg.

⁴³ South African Children’s Cancer Study Group (SACCSG). Available at: www.saccsg.co.za.

Document(s) 28 de 31