Find a clinical trial

NET-02 Study Recruiting Now – February 2020

NET-02:  A multi-centre, randomised, parallel group, open-label, phase II, single-stage selection trial of liposomal irinotecan (nal-IRI) and 5-fluorouracil (5-FU)/folinic acid or docetaxel as second-line therapy in patients with progressive poorly differentiated extra-pulmonary neuroendocrine carcinoma (NEC)
Chief Investigator: Dr Mairéad McNamara
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Current Clinical Trials Recruiting in the UK

Click here to read about NCRI Badged clinical trials in the UK 

How to find a clinical trial

Patients who want to volunteer for a clinical trial can search to find suitable studies in their geographic area. After finding a study on the website that looks like a good fit, the patient can contact the study investigators directly for more information on how to take part. This database is not the easiest to use and we are working with the iCancer team and INCA to find a easier solution to engaging more patients in clinical trials and to make the information about that trial easier. 

Below is a step by step guide that we found on the Ipsen website.

  1. Find the clinical trials website which is the world’s biggest database of studies that are looking for participants.
  2. In the “Search for Studies” box, type in your diagnosis (for example Neuroendocrine tumour) and hit Search – this narrows the search that might be relevant to you. If you can’t find any studies on your condition, try expanding you’re your search using “OR” – for example, Neuroendocrine tumour OR neoplasm. You also have the option of going to the “Find Studies” tab and choosing “Advanced Search” – this lets you enter all your search information at once. With this option, you can enter specific locations, but you may miss clinical trials that are close to that area.
  3. Above the check list, check the box beside “Only show open studies” – this eliminates the studies that have finished finding volunteers.
  4. Click on the blue tab that says “On Map” – this helps you find a clinical trial close to where you live, or in another specific place. Then scroll down to “Region Name”. Click on the word “map” beside your region (either continent or country). You might get another region list, allowing you to click on a more specific region.
  5. Beside your chosen region, click on “studies” – this will give you the list of studies in your specific region.
  6. Look at the list of studies, paying attention to the information beside “Condition” and “Intervention”. The condition should match your diagnosis, and intervention should match the kind of treatment you might try. Click on the title of a study that looks like a good fit – this gives you the details of a relevant clinical trial. “Interventional” studies focus on delivering a therapy in a controlled way. “Observational” studies might not list and intervention, since they track health in natural settings for large groups of people.
  7. Once you find a study that interests you, read through the information  and make sure the points under “Eligibility” apply to you, because everyone who joins the study must meet these criteria. If you’re not sure, schedule a time to talk to your doctor about it (If any of the points under “Exclusion Criteria” are true for you, look for a different study)
  8. If you meet all the criteria under “Eligibility” , it might be the right study for you. Find the phone number or email address under “Contacts and Locations” and inquire for more information – this puts you in touch with the study investigators but does not commit you to joining the study.
Click here to read about all clinical trials in the UK 

Find trials around the world

Click here to read about clinical trials around the world

The only crowd-funded cancer drug trial in history

The team at Uppsala University have prepared the above video update on the AdVince phase 1 clinical trial for neuroendocrine tumour.

“A total of twelve patients will have to be treated at different dose levels. So far five patients have been treated and there are still seven patients to go, ” says Prof Magnus Essand.

“The first patient was treated in March 2016 so we hope that we can now finish the next seven in the next two years from now.

“Phase1 trial is about safety data primarily, that is the primary endpoint. But of course, we are also looking at efficacy if there are response.

“And we have seen responses already at the lower dosages we have seen occasions of tumour shrinkage in the liver that has been treated.

“So it is promising but before we say anything conclusive we need to finish the phase1 trial and we need to treat even more patients before we can make any firm conclusions. So it is very early days.”

Trying to find optimal investigations to get the most relevant information about what is happening to your tumour(s) is really important, so that the right diagnostic, treatment and follow up plans can be made. Below is some interesting information on a test that is being trialled at the moment. 
‘NETest – Research ongoing for potentially new and more specific  non-invasive test that uses a blood sample to inform your doctor what the activity of your neuroendocrine tumour is at the time your blood was drawn.
There are no clinical trials in the UK at the moment however there are 3 ENETS Centres of Excellence (Royal Free Hospital, King’s Hospital and Hammersmith Hospital)  in London that are using some samples of the NETest free-of-charge, as part of their routine follow-up of NET patients’
Read more here 
****Please note the information above is commercial information and not written by the NET Patient Foundation***

Completed Studies 

A list of recent published trials with links to data.

Research publications from the Neuroendocrine Cancer UK (formerly NET Patient Foundation)

In house research from the NET patient Foundation