INCTR (Brussels) Annual Report 2017

Branch: INCTR
President: Dr. Ian Magrath
Board Members: Louis Schoofs (Treasurer); Sidney Epelman; Simon Sutcliffe; Max Parkin; Nausherwan Burki; Sultan Alsedeiry, Stuart Brown,
Collaborators: Martin Ogwang: Muheez Durosimi; Stella
Partners: St Mary's Hospital, Lacor, Gulu, Uganda
Address: INCTR
Rue Engeland 642
1640 Rhode-St-Genese
Country(s): Uganda, India
Year Established: 2000
Annual Report: INCTR’s Annual Report, 2017

INCTR’s Web Site

INCTR’s web site was updated in 2017. The updates provide viewers of the site with more information about INCTR, including its structure, relationship with other branches and its current programs and projects, including those being carried out by INCTR’s branches. Older information that is no longer relevant was also moved from the main menu bar or archived in other parts of the web site. Efforts to continually update the web site and several linked wiki sites (e.g., the Faculty Members sites which includes annual reports from the 6 branches that voluntarily collaborate as the INCTR consortium (or corporate INCTR), have been on-going throughout the year.

INCTR’s Annual General Assembly of Active Members and Governing Council Meeting

INCTR’s Annual General Assembly of Active Members and Governing Council Meeting took place on March 11, 2017 in Brussels. INCTR’s financial report for 2016 and the auditor’s report of the 2016 accounts along with the proposed budget for 2017 were presented. Following this, Dr. Magrath gave a presentation about the origins of INCTR and how the organization has evolved to date. The representatives (presidents of branches or program leaders) provided updates about their respective activities and future directions that they wish to take with these activities for the coming years.

INCTR’s Strategy Meeting

Following its Annual General Assembly and Governing Council Meeting, INCTR held a strategic planning meeting. The future evolution of INCTR and strategies to develop INCTR further as an organization were discussed as well as mechanisms for expanding INCTR and it work. This meeting took place March 11th and 12th. Participants included the Presidents of the majority of INCTR’s branches (INCTR Brasil, INCTR Canada (Two Worlds Cancer Collaboration), Alliance Mondiale Contre le Cancer (INCTR’s French branch, INCTR India, INCTR USA, representatives from the Challenge Fund (the Chairman of the Board of Trustees, another trustee and its Executive Director), the INCTR UK Office Director and Program Directors and members of the Pathology Program, the publisher of Cancer Control as well as Active Members and Governing Council members. Another Strategic Meeting is being planned for 2018 to build upon what was discussed during the meeting and to share work that is common to selected branches in order to replicate successes to other countries where the branches are active.

1. Meeting with Dr Sidnei Epelman, President of INCTR Brazil
Early in 2017, Dr. Sidnei Epelman, President of INCTR Brasil visited Brussels to discuss the expansion of the Pediatric Oncology Program. Dr. Epelman shared his on-going work in the treatment of retinoblastoma (RB) using intra-vitreous chemotherapy and/or delivery of chemotherapy (melphelan) via a catheter placed in the ophthalmic artery, which has led to cures without sacrificing the eyes of children – even children with advanced intraocular disease. He considered that this form of therapy could potentially save the eyes of many children living in communities of poor indigent farmers or in urban slums and would be cost-effective provided the necessary training was given to personnel involved in the care of children with RB. He considered that this could be done in equatorial Africa – particularly in the countries where INCTR’s French Branch, Alliance Mondiale Contre le Cancer (AMCC) is working to improve the care of children with RB. Additionally, he and the team at Santa Marcelina Hospital in Sao Paulo are also collecting information via a questionnaire regarding “Problems Faced by Parents of Children with Retinoblastoma Prior to Treatment”.
During this visit, he reported that the first and only hospice for children and adolescents with cancer in Brazil has been established. He described the various fund-raising efforts that continue to support the hospice, but also emphasized that parents and families have also contributed what they can to ensure that the hospice flourishes.
The need for an accurate diagnosis, particularly in a country like Brazil where resources may be high or non-existent or minimal at best for pathology services, is vital, since without a correct diagnosis, children may receive inappropriate care. A central pathology review of brain tumors was conducted in Brazil, which demonstrated that many children with brain tumors were not being given appropriate care. This work continues and has now expanded to include childhood leukemias. This work has demonstrated that an accurate diagnosis for children with brain tumors and leukemias has been established.

2. Meeting with Dr. Ama Rohatiner
The reason for the meeting in Brussels was to in order to further discuss ways to ensure that INCTR’s Burkitt lymphoma (BL) project can continue effectively. During her visit, a teleconference was held with St Mary’s Hospital Lacor (LH) in Gulu, Uganda in order:

1. To plan a site visit that was mutually convenient, such that further training of new staff could be undertaken, and

2. To understand reasons why patient accrual to the protocol for the Treatment of Burkitt Lymphoma dropped off at LH following the departure of Dr. Valeria Calbi early in 2026. Dr Colbi is an Italian haematologist who had worked at Lacor hospital for many years

3. Meeting with Dr Rosario Tumino in Brussels
In June, Dr. Magrath and Melissa Adde met with Dr. Rosario Tumino, an Italian hematologist to discuss the possibility of collaborating with him in order to establish a fully functioning pathology laboratory at the Bugando Medical Center in Mwanza, Tanzania.

4. Meeting with Medicins sans Frontieres
In December, Dr. Magrath and Melissa Adde met with representatives of Medecins Sans Frontieres to discuss MSF’s plans to expand some of their services to include cancer care for children with Cancer as well as providing primary prevention via HPV vaccination and Hepatitis B vaccination.

Site Visit of St. Mary’s Hospital Lacor (LH), Gulu Uganda

Melissa Adde, INCTR’s Executive Director, and Dr. Ama Rohatiner, a member of the Challenge Fund’s Board of Trustees, made a site visit to LH in July 2017. They were welcomed by the Institutional Director, Dr. Martin Ogwang who gave them a tour of the hospital. They learnt that the Pediatric Ward covers a wide range of services for children and adolescents with a variety of health problems. The Pediatric Ward also has a section devoted to children with cancer which is known as the “Burkitt’s Ward” since more than half of all pediatric cancers in Africa are Burkitt’s lymphomas. Following their orientation to the hospital, they worked with Dr Valeria Calbi, Director of Pediatric Services to perform data monitoring – comparing data reported on case report forms (CRFs) with the medical records and to try to complete missing data and or identify data that could be entered into the central database for the BL study, and which, if of sufficient quality, could be analyzed in detail and published.

Subsequently, they met with a variety of staff – including those involved in pathology services, cancer registration, palliative care and most importantly, the clinicians and nursing staff involved in caring for children on the BL ward. They also had the opportunity to speak with parents or guardians and their children. Prior to departure, they met with members of the staff of the Danyo Family Home – that provides on-site accommodation and support to the families and children with cancer (regardless of whether the children are in-patients or out-patients). In the course of the next week, they attempted to determine the problems faced by the Director of Pediatrics in attempting to ensure that accurate data (data elements required are spelled out in the protocol) is collected on the pediatric cancer patients, and in particular, the Burkitt lymphoma patients, because of their high incidence rate in Lacor. Unfortunately, the loss of Dr Calbi means that there are now no pediatric oncologists or hematologists in Lacor. It was decided that there needs to be a greater focus on the treatment of potentially curable tumours and it was agreed that there would be at least weekly on-line meetings to discuss specific cases, or frequently encountered toxicities since this will lead to the greatest number of lives saved. The agenda for these meetings will be discussed and the meetings initiated as rapidly as possible. Another site visit will take place in 2018 to provide additional training on-site and to assess progress made since the last visit.

Follow Up with Participating Centers in the BL Study

Since the time of the site visit, there has been a great deal of follow-up to ensure that operations continue to run smoothly at LH. INCTR has established a good working relationship with the Danyo Family Home and its partner, Soleterre, Uganda. It is anticipated that INCTR will expand its work to encompass the support for more children with cancer in 2018. INCTR continues to advise Lacor Hospital about the care of patients when urgent problems arise.
Dr. Karin Schurfeld, a pathologist from Italy, who works with an Italian NGO also visited Lacor Hospital in 2018 and initiated discussions about holding a central pathology review of at least childhood cancers. The review entails the external pathologists making diagnoses and comparing them to the diagnosis made at Lacor. Decisions will need to be made about where the study is conducted (Lacor or the Dept of Pathology in Siena University, where Dr Leoncini, is head of the Department of Pathology. The site visit is planned to take place in February 2018 (led by Dr. Lorenzo Leoncini).

Renewal of MoU with Lacor Hospital

INCTR renewed its Memorandum of Understanding with Lacor Hospital and has provided a partial payment to the hospital. It continues to provide all drugs for the treatment of patients with pediatric cancers and INCTR has provided a letter of support for LH which is attempting to obtain a small grant from the Burkitt Lymphoma Foundation for Africa in the USA. In addition, INCTR has been invited to submit one or more grant proposals to Celgene, a pharmaceutical company.

1. Abafemi Awolowu University Teaching Hospitals Complex in Ile-Ife, Nigeria continues to collaborate with INCTR in the treatment of BL. Funds will be provided as needed to this institution, which has access to funds for the treatment of BL, while the haematologist Dr Durosimi has considerable experience in the treatment of BL. Nevertheless, INCTR will help to train additional physicians in the treatment of BL.

INCTR’s Status as an NGO (referred to now as a Non-State-Actor) in Official Relations with WHO
INCTR submitted its 3 year report on the work that it has contributed to various projects that WHO required assistance in – namely cancer registration and also for the Eastern Mediterranean Regional Office. The WHO Technical Officer assigned to oversee INCTR’s work with WHO has changed and INCTR has held a series of teleconferences with him (Dr. Andre Ilbawi) to discuss ways in which INCTR can support WHO. It is anticipated that a work plan for 2018 will be prepared which will be followed by a three year work plan for 2019-2021.

Due Diligence Report for Global Giving
INCTR submitted its due diligence report to Global Giving – a US based 501c charitable organization which functions as a donation site for a large number of projects, including those relating to countries with minimal resources. INCTR’s project is entitled “Cure 250 Children with Burkitt Lymphoma in Africa”. It has continued to developing funding and has raised its target several times. The latest target is $90,000 and INCTR is close to reaching this. It will also be exploring the possibility of establishing the project on an additional site in Africa. Information is being collected about the other types of childhood malignancies that are being seen at our partner institutions and if funds permit, it is planned to expand the project to all pediatric neoplasms.
Future Plans: 1. Development of a cancer prevention program in India (and in closd partnership with INCTR India

2. Continue to develop pediaric oncology in Africa
Year: 2017
Date of Last Report: 2016
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Image 2: file:img-1537/IMG_1537.JPG

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