National GIST Tumour Bank
National UK GIST Registry
What is the purpose of the study?
You have a condition called Gastrointestinal Stromal Tumour (GIST). We have developed a computer database (registry) in order to record as much information as possible about the treatment of patients with GIST from across the UK. Collection of this information, pertaining to the number of people in the UK with the disease, along with detailed descriptions of your diagnosis and treatment will help us to better understand:
- How common this disease is in the UK,
- How the condition is currently being managed by doctors, and
- The long-term implications this has for GIST patients, such as you.
The UK GIST Registry has been approved by the national research ethics committee
What will happen to me if I decide for my information to be included in the registry?
If you are interested in volunteering your information to be included in the registry you will be asked to sign a consent form to confirm that you are willing for your doctor/healthcare provider to store information describing your condition and its treatment on a central computer database. All data will be 'anonymised' so that no personal information will be stored. In addition, choosing to volunteer your information will not influence your treatment or the management of your condition in any way. Similarly, no action will be required from you. Your consent to participate will simply enable your doctor/healthcare provider to record details of your condition on a computerised database for scientific analysis. Following these analyses it is likely that the research and anonymised data will be published in scientific publications.
What about confidentiality?
The information that we collect will be 'anonymised' so that you will not be identifiable from the information we store. As such, your name, address, NHS number etc. will not appear on the dataset which the study researchers receive for analysis.
How many other patients will be included in the registry?
Healthcare providers from GIST treatment centres across the UK will be invited to contribute patient data to the UK GIST Registry. As such, we anticipate that up to ~900 GIST patients may be included per year.
What if I don't want to offer my information to be included in the registry?
You are free to refuse to volunteer your information for this registry without having to give a reason and without this affecting your present or future medical care. You can also withdraw your consent at any time and your information would be immediately removed from the UK GIST registry.
Since the start of PAWS-GIST in 2010 or aim has always been to stimulate research for improved treatments and a cure. It has taken a while as we needed first of all to set up The National GIST Tissue Bank, The PAWS-GIST clinic and then locate some researcers willing to work with us. However our dream is beinging to come true...
This link will take you to the research page of the GIST Support UK website which lists all of the research currently funded by us, the majority of which is PAWS-GIST specific research. It is only as a result of fundraising by family friends and supporters that this work can happen. Thanks to everyone who has and continues to raise funds for PAWS-GIST, look at what you are helping us to achieve! Research