FREQUENTLY ASKED QUESTIONS
CAN SOMEONE REGISTER ME ON MY BEHALF?
- You may appoint someone to complete the information on your behalf
WHAT DOES LIVING WITH CANCER DO?
- A platform for all people who have been diagnosed with any type of cancer and are in different stages of their cancer journey
- We are a support group to anyone requiring support during their cancer journey
- We have a patient led cancer registry to assist with supplying valuable information to organisations that would utilise the source of information to make decisions about distribution of resource, gain a deeper understanding of the actual cancer status in our country
HOW DO YOU GET IN CONTACT WITH SOMEONE FROM LIVING WITH CANCER?
See our contact details page which includes email, WhatsApp group and contact number
WHAT KIND OF SUPPORT DOES LIVING WITH CANCER PROVIDE?
- WhatsApp support
- Support meetings
- Information source
- Network collaboration
WHAT MAKES THIS REGISTRY DIFFERENT FROM ANY OTHER?
- It is patient-led , so the information is sourced from the patient and not medical and pathology institutions
WHO WILL HAVE ACCESS TO THE INFORMATION IN MY PROFILE?
- Personal details will be kept confidential, only if the scientists or medical practitioners would like to contact the individual permission will be obtained prior to sharing any information
WHAT WILL THE INFORMATION BE USED FOR?
- Data will assist in understanding where the effort of the various initiatives and programmes should be focused
- Provide insight as to the focus on investment for cancer treatment and supportive care
- Understand high risk cases for example: age groups, sex, geographical locations and
- Focus of resources to assist with decision making regarding equipment purchases
- End point of cohort studies and clinical trials
- Statistics for funding of support groups
- To raise awareness especially for rare type cancers
- Decision making on areas of support
- Assist with navigating the cancer journey
- Research funding for scientists
- Supply the data to CANSA to assist them with understanding how best to allocate their resources for the patient. This will provide insight to the patient on how best to cope and therefore support their journey
- Provide information to pharmaceutical companies for potential cures
- Your name will never be disclosed. Your medical data will be part of a collective pool of data, with the sole purpose to better understand the cancer landscape in South Africa
ARE THERE ANY FEES PAYABLE TO BE ON THE REGISTRY?
- There are no fees payable to be part of the first patient-led cancer registry.
WHAT BENEFITS ARE THERE TO BEING ON THE REGISTRY?
- The need for a cancer registry is based on some of the following considerations. The major distinguishing factor being between what the government’s current registry is that it only encapsulates the Ekurhuleni region and the information is collected through traditional channels including pathologist, medical insurance, clinics, Hospice and oncology channels
- Because not all types of cancers are included, the aim of the proposed registry is that it is patient led and being captured via a mobile application with the aim of covering all geographic locations within South Africa
- Another relevant factor is that the data will be real-time thus making it accurate and easily accessible
- The registry will assist with collection of data reporting, storage, management analysis and incidences across all population groups, sexes, geographical location and age groups