Developed, agreed and signed by representatives of worldwide GIST Patient Advocacy Groups during an international conference from the 29th of June until the 1st of July 2007 in Bad Nauheim, Germany.

BACKGROUND STATEMENT

1. Gastrointestinal stromal tumour (GIST) is a rare cancer of the mesenchymal (connective) tissues of the stomach, gastrointestinal tract and related organs. The incidence of this cancer is approximately 12 -15 per million of population, and it is regarded as a rare disease. It accounts for less than one half of one percent of all cancers diagnosed.
   
   
2. In the early years of the 21st century the treatment of GIST was revolutionised by the introduction of tyrosine kinase inhibitors. Prior to their introduction a patient diagnosed with advanced GIST had a life expectancy of less than two years. With tyrosine kinase inhibitors (e.g. imatinib for first-line therapy) the prognosis of patients has improved significantly. Over 85% of patients respond to these drugs and benefit for many years.

PURPOSE

1. The worldwide advocacy groups supporting patients with GIST are all concerned about the differences that exist in the way in which patients are treated, and the ways in which healthcare systems often delay access to new treatments.
   
   
2. We believe that all patients should be treated equally regardless of race, nationality, faith, age, sex or economic status.
   
   
3. This document is a consensus Declaration from the GIST patient advocacy groups assembled at Bad Nauheim, Germany on Sunday 1st July 2007. It identifies a set of basic standards which we call on doctors, other health care practitioners, hospital administrators and health care funders to adopt and to build upon for the benefit of the patients they serve.
   
   
4. The global GIST patient advocacy groups will monitor the implementation of this declaration and publicise the healthcare systems demonstrating adherence to it.

The undersigned GIST patient advocacy groups collectively call on all those responsible for the treatment and care of patients with gastrointestinal stromal tumour (GIST) to:

1. Ensure that patients are diagnosed promptly and accurately
   
   
2. Provide the information and resources which allow patients access to specialist second opinions
   
   
3. Provide treatment and care to GIST patients through the hands of specialist multi-disciplinary teams which conform to standards for a centre of expertise in rare diseases (see note). All members of these teams should have specialist knowledge, continuing experience of treating GIST, and participate in national and/or international networking with other centres of expertise.
   
   
4. Provide access to expert pathology and mutation analysis services which give doctors and patients the information they need to make an informed clinical decision.
   
   
5. Provide accurate and timely information relevant to the patient at each step along the treatment pathway
   
   
6. Provide access to psychological support and treatment
   
   
7. Adopt an internationally accepted treatment guideline (see 8 below) and ensure that the resources required to deliver it are available to doctors and patients
   
   
8. Treat patients in line with an internationally accepted treatment guideline (see note) informed by the published evidence from scientific and clinical research
   
   
9. Maintain and review funding for treatment so that no patient suffers through failure to treat, or through stopping treatment recommended by specialist doctors
   
   
10. Provide patients with access to clinical trials regardless of race, nationality, faith, age, sex or economic status.