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NET Research

Doctors, in managing their patient's illness make myriad clinical decisions which hopefully result in favourable outcomes.

 

These clinical decisions are formulated after the integration of a number of inputs including patient factors, physician factors (experience, knowledge) and evidence-based medicine.

Although it may seem intuitive, we need to define what we mean by evidence-based medicine; it is the 'conscientious, explicit and judicious use of current best evidence in making decisions about the care of the individual patients'. Over the last two decades there has been a movement to following an evidence-base approach to clinical decision making.

Keeping this in mind, when we look at medical literature there is a large variability in quality, and not all of the published studies that you read will stand up to rigorous scrutiny and analysis. 'Not all research is good research'. The table below indicates the hierarchy of evidence from high to low. It may help you discriminate a little as you read the literature on neuroendocrine cancers.

  1. Systematic reviews of Randomised Controlled Trials
  2. Randomised Controlled Trials
  3. Other Controlled Clinical Trials
  4. Observational Studies - case controlled and cohort
  5. Anecdotes, case studies, personal opinions etc


When we look at research and the clinical application of the published results related to neuroendocrine cancers it is easy to get confused. Unfortunately for NET patients, because of the limited of numbers of patients and the lack of well managed NET patient databases, it is difficult for researchers to perform the exacting studies (eg randomised controlled trials) that give high levels of evidence. Much of the work related to NETs over the years has been based on observational studies, case reports and anecdotes. This situation appears to be changing as more people are being diagnosed with NETs, more physicians are gaining knowledge about NETs and greater effort is being made to monitor patients (with databases and better follow up) and actively recruit them into trials.

Thanks to the internet, patients, carers and physicians can obtain the same information about diseases with just a few keystrokes. The important aspect of this increased access to information is in the appraisal, discussion and potential use of this knowledge which is ultimately the responsibility of the treating physician after consultation with the patient.

Neuroendocrine Cancer Research

The following websites have current research trials that are in the process of recruiting NET patients. The Unicorn Foundation encourages Australian NET patient involvement in such studies only after consultation with your doctor.

clinicaltrials.gov

ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details.

Australian and New Zealand Trials Registry

The Australian New Zealand Clinical Trials Registry (ANZCTR) is an online register of clinical trials being undertaken in Australia, New Zealand and elsewhere.

In the search box type "neuroendocrine" (include the apostrophes).