May they use the bits of me they have taken?

The Human Tissue Act

Background

The Human Tissue Act 2004 regulates activities concerned with the removal, storage, use and disposal of human tissue. The act was passed as a reaction to events at Alder Hey Children's Hospital, where body parts and tissue samples from deceased children had been retained without asking the relatives.

Hospitals will normally be registered under the Act, and there will no problem when a hospital takes tissue samples from a patient and uses them to assist in the patient's diagnosis and treatment. However problems may arise if the hospital (or other research organisation) wants to use the material retrospectively for general research into treatment pathways, particularly when the material belongs to a patient who has died. Among other things the Act creates a specific offence of "DNA theft". This raises potential problems for a researcher who wants to do mutation analysis on tissue from deceased patients, unless there is a signed and witnessed statement of consent from the owner of the tissue.

How you can help - National GIST Tissue Bank

As part of the effort to create our PAWS-GIST clinic in the UK it was concluded that a National GIST tissue bank would be needed so that any research team considering work on GIST can have a central place to apply for this rare material.

Professor Andrew Hall, Director of the Northern Institute for Cancer Research, prepared and submitted a proposal to the ethics committee to set up a National GIST tissue bank and was given approval. In future these rare samples (fresh, frozen and in paraffin blocks in addition to other relevant materials can be stored for use in research programmes and we are eternally grateful to Professor Hall for his expertise and help in getting the National GIST Tissue Bank started.

In 2017, the National GIST Tissue Bank transferred to its permanent home at the Royal Marsden centre for molecular pathology in London. 

Access to primary clinical samples (tumour and matched normal blood) is vital to progress our understanding of rare tumours such as GIST. With your help we can grow a national collection of samples available to anyone with a good quality research proposal. This bank is a valuable resource that will support GIST cancer research locally, nationally and internationally. It will provide researchers with a diverse selection of high quality GIST tumour specimens and clinical data obtained by dedicated tumour bank staff who follow strict procedures and ethical guidelines.

Research will progress faster if there is a good supply of GIST tissue upon which to test potential treatments and develop new diagnostic tests. Operating within The RoyalMarsden in London, the National GIST Tissue Bank coordinates the collection, storage and distribution of a variety of paediatric and adult biospecimens including fresh, frozen and paraffin blocks in addition to blood samples and clinical data.

Working in collaboration with pathologists, medical oncologists, surgeons and other hospital personnel, specially trained staff will obtain patient consent, collect samples and assemble clinical information about each donor and their corresponding specimens.

Please try to assist in this research by sending samples to the National GIST biobank.

If you have samples to donate please go to: www.givemysample.org and  click on directory for details of the consent and donation process for the National GIST Tissue Bank.

If you are about to have an operation, please contact Jayne Bressington at jayneandkim@aol.com. 

 

 

 

New UK clinical practice guidelines for the management of gastrointestinal stromal tumours (GIST) published by British Sarcoma Group - NEWS >>>

GSUK's Chair Nic Puntis discusses the BBC's report on the Cancer Drugs Fund on BBC Wiltshire Radio - NEWS>>>.  

Michael Sayers...news

Update on GIST clinical trials that are recruiting and in the pipeline....

Forthcoming Patient Meetings

  • Friday 6th October in Cardiff
  • Thursday 7 December in Edinburgh
  • Friday 9th March 2018 in London
  • Friday 5th October 2018 in Manchester

More information will appear on this website in due course.

We have launched our first GIST patient survey and hope to gather a better understanding of the landscape for GIST patient treatment in the UK. The survey closes on 10th September 2016 so if you would like to participate please complete the survey by clicking this link

'ALT' GIST Trial to open in the UK soon! We have been alerted to a new trial that will be opening in the UK in the near future for metastatic GIST patients. Read more on our Trials & Research page 

PAWS-GIST Clinic 7 - Newsletter June 2016

GSUK attends Cancer52 parliamentary reception to raise awareness of rare and less common cancers.

GSUK Research Update 2016 - Read all about it here

NHS England's Sarcoma Service Specification consultation is open until Weds 20th April 2016.       Please register your views by responding directly via this link.                             GSUK's response can be viewed here

Cycle for GSUK! We have four allocated charity places on the RideLondon event for this year and also for 2017 and 2018. Go to our News page to find out more!

The Masitinib Trial is now open.  For further details of this trial, and to find out which centres and clinicians are involved, please go to our Research & Trials page. 

Regorafenib has remained on the NHS England Cancer Drug Fund List for GIST patients! Read more!

Can you help Professor Eamonn Maher with his research Study? If you have had, or have, two or more primary GISTs, or a GIST and another tumour, find out more at the bottom of our research page

PRESS RELEASE - UKTV announces GIST Support UK as its Charity of the Year 2015

TUMOUR BANK UPDATE: "We have been granted approval from the NHS ethics committee for our National GIST Tissue Bank which will store these valuable GIST tumour samples for research. If you are about to have an operation and would like to donate your tissue for research please email  with your contact details. Visit our Retention of tissue page for regular updates.

Scottish Sarcoma Network: Interested in attending their Sarcoma education days or finding out about the services on offer ? Read our News page

Use of human tissue
Do go to our new "Retention of Tissue" page and please sign a consent form!

GSUK funds research!
GSUK provides £20,000 from donated funds to help start a research project at the Royal Marsden. Visit our News page for further information and picture.

Funds being raised for UK PAWS GIST clinic
See our News Page for more information.

NICE approves improved treatment for ascites
The PleurX system allows the patient to drain fluid from the abdominal cavity without having to pay repeated visits to hospital. More information on our News Page.

European Commission approves three years' adjuvant use of Glivec
Visit our News page for more details.

Masitinib
A press release in February claiming the effectiveness of this drug as a replacement for Sunitinib appeared to be premature at the time. However subsequent news may be more encouraging! See our News page for more details.