Patient-led cancer registry aims to close the gaps in diagnosis data

The National Institute for Communicable Diseases (NICD) and advocacy group Living With Cancer SA have launched a patient-led cancer registry, which will enable patients to supply the agency with details of their diagnosis.

The collaboration is expected to augment the information now available to the NICD’s national cancer registry (NCR) and provide a more accurate picture of SA’s cancer landscape.

The NCR is the primary repository of SA cancer data. Until now it has relied on data from pathology laboratories, which are required by law to report all confirmed cancer cases, and population-based surveillance conducted in Ekurhuleni and eThekwini.

As not all cancers are confirmed by blood tests or biopsies analysed by pathology laboratories, the registry has an incomplete picture of SA’s cancer burden, said NCR director Mazvita Muchengeti.

Some cancers are diagnosed clinically, or with imaging techniques such as X-rays that are not conducted by pathology laboratories, she said. Liver cancer, for example, is often diagnosed without pathology tests.

Accurate cancer data is vital for evidence-based policies, and for the allocation of resources, Muchengeti said.

Living With Cancer founder Belinda Wagner said patients will be able to upload details of their cancer diagnosis on its website, and the information will be shared with the NCR.

The registry was launched ahead of World Cancer Day on February 4.

Earlier this week the Union for International Cancer Control (UICC) released a global report highlighting how inequities in access to health services undermined individuals’ ability to prevent and survive cancer, including in SA.

Past UICC board member Ann Steyn said diagnostic and radiation equipment were in short supply, particularly in public hospitals not linked to academic institutions.

“With 84% of the nearly 60million population accessing public healthcare, there are enormous challenges to overcome.

“The treatment varies, with only five out of nine provinces offering specialised cancer care. Moreover, most cancers are diagnosed at a late stage due to lack of proper early detection and screening systems, affecting survival rates adversely,” she said.

The lack of specialised cancer services in many provinces also means patients have to travel long distances.