Making a difference: The KCSN Patient Registry
We are asking for your help with a very special and unique project. Our aim is to gather information about the diagnosis, treatment and care of kidney cancer patients. We have set up a kidney cancer patient registry, which we would like to develop by encouraging patients to provide a health profile. Individual health profiles will contain details (data) about all aspects of your care and treatment, from the day you were diagnosed through treatment and beyond. This will be the first time kidney cancer patients have been able to provide their data in a structured and efficient way. Patient-generated data like this has been a huge gap in the armoury of clinicians and researchers, who need real world data to help them in their work. Currently, only snippets of information are available from various NHS sources; numbers of prescription issued, dates when individual patients enter and leave hospital, an annual survey of cancer patients’ experiences. But it is almost impossible to build up a true picture about drug effectiveness or success rates following different types of surgery in the real world outside clinical trials. Industry, clinicians and researchers also need to know how drugs work for patients with rare subtypes of kidney cancer, and the effectiveness of different types of imaging, radiotherapy, and surgical techniques, for example.
The way kidney cancer treatments are used and the effect of these treatments on the quality of life of patients in normal clinical practice is called real world data. Real world data is what happens when a drug (or a treatment) is used by patients outside of a clinical trial. It is a serious attempt to record what happens as patients go about their everyday lives whilst being treated. This can tell us, for example, the recovery time following a partial or robotic nephrectomy or the severity of side effects whilst taking different cancer drugs. Using real world data is becoming increasingly important to many different groups of people. For researchers it could help demonstrate which drugs are effective for different types of kidney cancer (in the absence of biomarkers for kidney cancer this is valuable information). For clinicians it provides real evidence about how well patients manage side effects and their quality of life whilst on treatment. For regulatory bodies like the National Institute for Health and Care Excellence (NICE), it can affect how decisions are made about access to cancer treatments, and that can help patients gain access to new innovative medicines.
The collection of real world data has always been the problem. As a patient you may talk about some elements of your care when you attend a clinic appointment, and it might be entered on your NHS health record … but sadly very often it stays there! As patients we possess vital information and it needs to be recorded, collected and then made accessible to help us get the best care possible for other kidney cancer patients.
KCSN is in a unique position because we have a large and active membership of patient and carers to run an important project like this. We would like to invite you to complete a health profile, which will make you a part of the first ever UK wide registry of kidney cancer patient information.
With guidance from our Medical Advisory Board and with your help, the KCSN patient registry will help us:
- To inform health technology appraisals (conducted by NICE and the Scottish Medicines Consortium (SMC)) about the treatment of kidney cancer in the real world
- To give researchers information about numbers of patients who may be suitable for a specific clinical trial, i.e. patients with hereditary kidney cancer
- To help patients with rare subtypes of kidney cancer come together for mutual support
- To formally determine how kidney cancer is treated in the UK in normal clinical practice in the form of an observational study
- To identify inconsistencies in care (how kidney cancer patients are treated in different regions of the UK) to help inform clinical guidelines for the treatment of kidney cancer
- To provide information about kidney cancer as requested from time to time by NHS organisations and research institutions, such as the National Cancer Research Institute (NCRI) and NICE, and industry (i.e. drug and medical equipment manufacturers)
- To enable patients to take part in events, surveys and studies about their treatment and care, and thus play an individual role in moving kidney cancer research forward
- Real world data can help eradicate inconsistencies in care and help to improve the lives of all kidney cancer patients regardless of where they live in the country.
The data you provide will only be used for the above objectives, and will not be used for any other purpose.
Your personal health profile will be totally confidential and safe on our server. You will be able to access your health profile at any time and any place. All your data will be encrypted and anonymised for the purposes of analysing and reporting the data. You can be 100% sure that no personal identifying information will be accessible or made available to anyone outside the KCSN charity. The requirements of the Data Protection Act will be strictly followed at all times when handling personal health and identifying information. Please see our Privacy and Data Protection Policy for more information about what this involves.
Your participation in this project is entirely voluntary; you can change your mind or stop at any time. You do not have to provide an answer to all the questions if you don’t want to. Completing a health profile will take about 30 minutes. You don’t need to complete your health profile in one go – you can save your information and add to it or complete it at a different time, and update whenever you wish to.
In designing this registry, we have the support of the Renal Clinical Studies Group at the National Cancer Research Institute (NCRI). Dr James Larkin, Consultant Medical Oncologist at The Royal Marsden Hospital in London, and Trustee of the Kidney Cancer Support Network (and former chair of the NCRI Renal Clinical Studies Group), says:
‘Registries like this are very valuable first and foremost because they give people the possibility of getting in touch with other people in the same situation. This is particularly important for those with uncommon types of kidney cancer, or, for example, those wanting to talk about taking part in a clinical trial. Understanding the benefits and side effects of treatments in everyday practice is also very important, because this often differs from the results of clinical trials; this information is difficult to get in other ways and this database provides a wonderful opportunity to contribute to this’.
If you have any questions about completing a personal health profile, or would like additional information please email us and we will get back to you as soon as we can.
By answering the questions in the health profile you indicate that you:
- Understand the purpose and nature of the collection of your personal health information, and you take part voluntarily
- You understand that you can stop completing a health profile at any time, without any penalty or consequences
- You give permission for the data generated from your personal health profile to be used for the purposes listed above.
Thank you for your valuable help with collecting this information about your kidney cancer treatment