INCTR Brasil Annual Report 2015
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Branch: INCTR Brasil
President: Sidnei Epelman
Board Members: Claudia Epelman
Volunteers/Employees:
Collaborators: 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, as well as, in fostering the development of health care professionals involved in the psychological/multidisciplinary support of cancer patients.
As associated Institutions INCTR Brasil, TUCCA - Association for Children and Adolescents with Cancer - and the Department of Pediatric Oncology, Santa Marcelina Hospital, put into practice INCTR international directives, and have become a worldwide benchmark for Pediatric cancer treatment, Clinical Research and Palliative Care.
Partners: Santa Marcelina Hospital
Tucca Hospital
Address: INCTR- Escritório de Representação Brasil
Av. 9 de Julho, 4275
Jardim Paulista
CEP 01407-100 –São Paulo, SP,Brasil

Tel.: (011) 3887 0593
Fax (011) 3885 7995
Country(s): Latin America
Year Established:
Annual Report: Main projects/initiatives:

o Pathology Program

 Central pathology review / Molecular Pathology Laboratory

The central pathology review was created, mainly, because in Brazil the mortality caused by cancer keeps high when compared with other countries In Europe and USA.
The central pathology review is an initiative to address the main question of the impact of a correct diagnosis on cancer treatment and survival, as well as, to measure the agreement of diagnosis. Thus, we have been offering molecular tests with no cost, and advice in the choice of therapy protocols based on diagnostic results

 Clinical Trials

Development of pathological and radiological review for Brazilian patients with Medulloblastoma in partnership with SOBOPE Brazilian Society of Pediatric Oncology


o Palliative Care (PAX)

 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.

 Pediatric Palliative Oncology Workshop, November 17-19, 2015

INCTR Brasil in conjunction with the Department of Pediatric Oncology, Santa Marcelina Hospital, hold an interdisciplinary Pediatric Palliative Oncology Symposium, focused on the comprehensive care of children with cancer and their families. Featuring experts, as the renowned physician Dr. Adam Rapoport from SickKids Hospital (Canada), share their experience and expertise with all attendees.


 Understanding the Provision of Palliative Care in the Context of Primary Health Care in Brazil

The study aimed to delineate the experience of palliative care from the perspective of health care professionals and, also, to determine the patterns of opioid use in patients under the care of specialist palliative care teams in Brazil.
The research was conducted, in 2015, by INCTR Brasil with technical support of the Brazilian Ministry of Health.



o Scientifical and Technical Cooperation Agreement by developing links with cancer centers and oncologists/scientists in Brazil. The Brazilian Branch has a major role in pediatric oncology and pediatric palliative care. This ongoing program covers institutions across the country.


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.

o Pediatric Oncology: Retinoblastoma

 Early Diagnosis / Retinoblastoma Campaign


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.

 International Symposium on Retinoblastoma, April 23 – 24, 2015.

Jointly organized by INCTR Brasil, TUCCA Association for Children and Adolescents with Cancer and the Department of Pediatric Oncology, Santa Marcelina Hospital.
The symposium, dedicated to “New treatments and approaches to Retinoblastoma”, aimed at sharing information and experiences on new developments in the fight against RB.
Dr. Brian Marr (ophthalmologist) and Dr. Ira Dunkel (pediatric oncologist) at the Memorial Sloan Kettering Cancer Center, New York, talked about their large experience in the treatment of retinoblastoma.


o Communication: Inclusion of INCTR logo in TUCCA´s website and Annual Report to reinforce the partnership between the organizations.
http://www.tucca.org.br/a-tucca/parceiros/
http://www.tucca.org.br/wp-content/uploads/2014/07/Miolo-Relatorio-Social-2014-COMPLETO.pdf

On-going Projects
INCTR Brasil is coordinating or participating in a number of projects including:

o Development of a Centre of Excellence in Pediatric Oncology at the Santa Marcelina Hospital

o Access to Accurate Cancer Diagnosis

o Retinoblastoma Early Diagnosis Campaign

o Palliative Care: Establishment of a palliative care program, with a focal point for training and institutional care at Santa Marcelina, and training of primary care physicians in this region of 5 million poor people.

o Psychosocial: Coordination of an Educational Program together with the Brazilian Society of Pediatric Oncology – SOBOPE
Future Plans:
Publications:
Month: 01
Year: 2015
Date of Last Report: 2014
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