Hello AuntAF and thank you for posting

I am very sorry to hear about your niece's situation and appreciate you wishing to explore all the options, including clinical trials.

We usually suggest that if people are interested in trials they discuss this with the specialist doctor involved in your nieces care as they are often aware of trials that are going on.

We have information about taking part in trials and a clinical trials database on our website, which you can look at. This lists the trials that we are aware of and have permission to put on the website.

Although our contact details are included on the website, the information nurses are not directly involved in running these trials, or recruiting patients on to a clinical trial.

Patients who wish to take part in almost all clinical trials must have a medical referral from their doctor to the doctor running the trial. If you see a trial on our database that the family are interested in, they will need to discuss it with your niece's cancer specialist. We suggest printing off a copy of the information and take it along to the appointment.

All trials have very strict entry requirements. So these must be matched to be able to take part. If it looks like an appropriate trial, the doctor can then send a referral to the doctor running the trial at the nearest participating centre.

Our trials database has the details of most of the current trials that we are aware of and have also had permission to include. But unfortunately, it isn't comprehensive as there may be trials we don't know about or haven't been allowed to include. The National Institute for Health and Care Research (NIHR) has a database on their website called Be Part of Research.  There are other trial databases, such as the ISRCTN (International Standard Randomised Controlled Trial Number) registry and a US trials database called ClinicalTrials.gov, which lets you search by country,  but both of these feed into Be Part of Research.

I cannot see any trials currently open involving DIPG in the UK however on Clinicaltrials.gov there seem to be a few that are in the pipeline but not yet open to recruitment. They appear to be international trials and the main centre for the UK will be Great Ormond street in London.

You say your family is in Ireland, It can be difficult for patients from outside of the UK to join trials in the UK as they are usually run within the NHS. However we have a page of information titled 'Trials for people outside the  UK' you can read.

I hope that this reply is helpful. Do contact us again if we can offer you any further information or support. You may find it helpful to talk things through with one of the nurses on our telephone service. The number to ring is freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Best wishes to you and all your family

Naomi