Survivorship Passport | About The Platform
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About The Platform

Childhood cancers are rare, but survivors are not. More and more children and adolescents survive cancer, and it is estimated that approx. 300,000 childhood cancer survivors currently live on our continent (in 2020, their number will reach nearly half a million). Many survive well past their 50th birthday, and this encouraging development is due to the major progresses made by researchers within the European clinical trial groups specialised in paediatric malignancies.

Although this is certainly a cause for rejoicing, many survivors suffer from side effects (chronic conditions, second malignant tumours, fertility issues, etc.) in the long term, that are severe enough to affect their daily lives. Another problem is the general lack of information – both on the side of survivors and of healthcare professionals – on the clinical history of the former patient and on the possible late effects stemming from having a tumour in the paediatric age. This missing knowledge becomes particularly critical in the transition from paediatric to adult care and when survivors move to another country, and can generate incorrect diagnosis and treatments.

One way of providing survivors with optimal long-term care is the creation of a ‘Survivorship Passport‘ for each child and adolescent cured of a cancer. This is a useful tool to provide instant access to the medical history of patients who ended a cancer therapy, making survivors and healthcare professionals aware of the potential risks or late effects stemming from the previous disease and treatment received. This self-generating document contains all details of the survivor’s disease and treatment, and a database for storing the clinical data and hence facilitate monitoring and research. Information is provided in an easily understandable way, and includes recommendations for an adequate follow-up, depending on individual risk factors. Both doctors and survivors will have the possibility to access this information via a dedicated secured website and a mobile app.

The Survivorship Passport

The project aims to provide every European childhood cancer survivor with a web based document, containing cancer history and therapy information.

 

The document, based on an internationally agreed format and given to the patient at the end of treatment, contains key information on:

  • the tumour type and location
  • the  clinical course of the original cancer
  • the cumulative dose of each pharmaceutical drug received, as well on undergone surgery(ies), radiotherapy plan(s) and hematologic stem cell transplant, if any
  • any other relevant information related to the treatment and the patient’s health conditions

 

The passport e-document is automatically generated with a bar code/QR code to easily access latest guidelines and personal passport (password protected), also through a dedicated Mobile App.