Daisy's Eye Cancer Fund - Rati's Challenge: Registry.

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Patient record keeping is currently basic across Africa.

National Rb Registry

Across Africa, retinoblastoma care is poorly managed, and appropriate follow-up is virtually non-existent. This situation is created by inconsistent and incomplete medical records, coupled with poor telecommunication networks between treatment centres.

     The Need

     Raising Awareness

     Global Rb Strategy

     Rati's Challenge

         Rati's Challenge

         Kenyan Rb Strategy

         Guidelines

          National Registry

          Awareness Raising

          Co-ordinated Care

          Child Life Support

          Family Support

          Artificial Eye Service

     Retinoblastoma Book

    World Rb Citizen Award

To address these challenges, we will assist in development of a national point-of-care database, using secure internet technology.

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eCancerCare will record patient data covering diagnosis, treatment and follow-up, and track treatment histories.

We will:

build the Kenyan eCancerCare database, and host it on a secure server;

provide training for clinicians and data managers in the use eCancerCare ; and

oversee integration and use of eCancerCare in existing care structures.

Local cellular networks are widely established in East Africa, and cellular technology is the principle form of telecommunication. We will develop strategies to harness this resource in the use of eCancerCare, thus reducing the challenges posed by slow landline internet communication. This approach will also enhance follow-up care.

For example, children treated for retinoblastoma require frequent follow up, but many families cannot afford the repeat visits to specialist centres. The solution:

Using eCancerCare, children will be identified for follow up at one of many pre-arranged eye camps, held regularly in rural areas across the country.

Doctors in the field will examine the child’s eye(s) and send information and ophthalmic photographs via a PDA directly to the specialists in Nairobi.

Following real-time consultation with those specialists, the child and parent could be transported back to the treatment centre with the eye camp team, if further examination or treatment is needed.

Improved record keeping through eCancerCare will:

ease the process of tracking treatment history;

improve inter-centre communication;

facilitate effective patient management;

allow sustainable follow-up of patients beyond treatment;

enable comprehensive evaluation of the national strategy as an effective approach in management of retinoblastoma;

advance understanding of epidemiology, treatment response and socioeconomic issues, thus identifying priority needs;

Once eCancerCare is well established, we will evaluate possible integration with the developing World Retinoblastoma Registry. The World Registry gathers data from around the globe to advance understanding of epidemiology, treatment response, regional issues and needs, and retinoblastoma biology. This data also provides a critical baseline for structuring multi-centre clinical trials.

Rati's Challenge          Kenyan Rb Strategy          Guidelines

          National Registry          Awareness Raising          Co-ordinated Care

          Child Life Support          Family Support          Artificial Eye Service

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