The scope of the project includes the establishment of hospital networks to improve access to care and earlier diagnosis, the initiation of public and professional education directed towards minimizing delays in reaching a tertiary care center capable of providing therapy for BL, continuing to improve the quality of diagnosis and treatment provided by the participating centers and identifying potential approaches to ensuring the sustainability of the overall program – including the cost of care.  Late diagnosis is a very important factor in determining outcome, since BL is one of the most rapidly progressive tumors and a high proportion will have progressed to an advanced stage within weeks to months, complicating treatment and reducing the chance of cure. Two tertiary hospitals in Tanzania and Uganda are participating in this project.  

The major achievements of this project include:

• Involvement of several NGOs concerned with supporting cancer patients by providing transportation, local accommodation and food for patients and their families.  
• Improved community awareness through education of attendees of antenatal clinics and well-child clinics, placement of posters, organized training for community leaders, and utilizing the media.
• Collection of data from parents about the reasons for delays in reaching tertiary centers in order to develop more effective approaches to overcoming these challenges and to create a more scientific approach in dealing with problems encountered by parents.
• Establishment of population-based cancer registries at the two tertiary centers in Uganda (which is now a member of AFCRN) and Tanzania. 
• Introduction of immunohistochemistry at the center in Uganda in order to improve the ability to distinguish between hematological neoplasms and solid tumors to ensure the validity of cancer registry data.  
• Using a uniform treatment protocol for BL - more than 800 patients have been treated since 2004.  
• Collection of data about presentation features and treatment outcome which has been able to document an excellent survival rate (for Africa) of over 60% at 3 years.
• Introduction of a salvage regimen in the protocol for those who relapse or who fail to respond has proven capable of curing patients with recurrent disease.  
• Psychosocial support for patients and their families was introduced at the tertiary centers.  
• Fund raising involving local NGOs has begun to generate financial support for the care of BL and other pediatric cancers, but is still at an early stage  

Although there is more to be done, a new model of care for the treatment of BL has been implemented not only at the two main tertiary care centers, but also in district hospitals and facilities at other care levels to ensure that patients are treated at the earliest possible time and delays in diagnosis and treatment are minimal and population-based data is available for accurate assessment of the impact of the program.

For more information about this project, contact info@inctr.be.