Annual Report INCTR Brasil 2013
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Branch: INCTR Brasil
President: Sidnei Epelman
Board Members:
Volunteers/Employees:
Collaborators: TUCCA (Association for the Care of Children with Cancer)
Santa Marcelina Hospital, Sao Paolo, Brazil
SOBOPE (Brazilian Society for Pediatric Oncology
Partners:
Address:
Country(s): Brazil
Year Established:
Annual Report: The Brazilian Branch of INCTR is working to help coordinate programs in Latin America, particularly in pediatric oncology and palliative care. The branch has a major role in training and education in clinical trials management and also in fostering the development of health care professionals involved in the psychological/multidisciplinary support of cancer patients.

Main projects/initiatives:

1. Clinical Trials: Development of pathological and radiological review for Brazilian patients with Medulloblastoma in partnership with SOBOPE, the Brazilian Society of Pediatric Oncology

2. Psychosocial/Palliative Care: TUCCA Hospice Francesco Leonardo Beira

As part of its overall mission to provide care and treatment to children and adolescents with cancer, TUCCA (Association for Children and Adolescents with Cancer) inaugurated the newly constructed TUCCA Hospice Francesco Leonardo Beira, the first pediatric hospice in Brazil, on 1st October, 2012. Patients are admitted to the hospice for end of life care, such as comfort measures and any other treatment recommended by the multidisciplinary team in the company of his/her family. The service is free and covers the costs of all aspects of care regardless of the duration of time in the hospice. The family is also given bereavement support after the death of the patient.

The hospice concept, although widespread in European countries such as England and the Netherlands, is not known in Brazil, so that TUCCA, a national association which supports children with cancer and which partners with INCTR, has brought the first Hospice to Brazil – to a very poor area in the East Zone of São Paulo.

The Hospice has sufficient space to fully meet the needs for end-of-life care of children dying from cancer in the Hospital Santa Marcelina, This is approximately 20% of patients treated by the pediatric oncology department at Hospital Santa Marcelina, since about 80% of patients with cancer are cured.

The hospice also has a recreational area, dining room, nursing station, and offers various activities for patients and their families.

3. The Brazilian Branch of INCTR has developed a number of Technical Cooperation Agreements with cancer centers and oncologists/scientists in Brazil and through these agreements has a major role in the continued development of pediatric oncology and pediatric palliative care in Brazil.

4. Campaign for the Early Diagnosis of Retinoblastoma

TUCCA (Association for Children and Adolescents with Cancer) and INCTR Brasil have succeeded in having September 18th declared the “National Day of Awareness and Encouraging the Early Diagnosis of Retinoblastoma” in Brazil. To gain the attention of the people of Brazil about the importance of the need for early diagnosis of retinoblastoma, TUCCA and INCTR Brasil cooperated with many other organizations in order to send a strong message to the Brazilian public on September 18th about the importance of the early diagnosis and treatment of children with cancer. One of the most notable events was held at night when the lights which illuminate the monument of Christ the Redeemer, which stands some 38 meters high atop the Corcovado Hill in Rio de Janeiro, were switched off for several minutes to draw attention to the blindness caused by retinoblastoma. A video of this event can be seen on http://vimeo.com/49922782.

5. From now on, TUCCS will include the INCTR logo in all of TUCCA´s e-newsletter in order to reinforce the partnership between the organizations.
Future Plans: Participation with others in the development of Completion of supportive care guidelines

Updating/revising INCTR's Palliative Care Guidelines (Portuguese version)
Publications: Magrath I, Epelman S. Cancers in Adolescence and Young Adults in countries with limited resources. 2013; Curr Oncol Rep; 15: 342-346
Month: 03
Year: 2013
Date of Last Report:
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Document: Magrath I, Epelman S. Cancers in Adolescence and Young Adults in countries with limited resources. 2013; Curr Oncol Rep; 15: 342-346

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