Hi I'm Tom Phipps
I was a teacher and got diagnosed with Parkinson's when I was 50 years of age.
Hi, my name is Alan Whone and I'm a consultant neurologist with an interest in
Parkinson's disease
at Frenchay Hospital in Bristol. When the opportunity came to
take part in the research trial I just jumped at the chance
This trial is based on some prior work that was done here at Frenchay
and elsewhere, where it seemed there was real potential that if you
took patients who've lost dopamine brain cells and you gave a growth factor
direct into their brain
the growth factor is called GDNF, that you can cause brain cells
in some way to restore themselves so you could actually reverse their Parkinson's
We're now trying to do this in a more advanced way
and are looking to recruit thirty-six people to try and answer this question
is GDNF capable reversing Parkinson's or not?
We're looking for patients
with Parkinson's who are aged between 35 and 75
that they've had movement symptoms of Parkinson's be it
tremor or stiffness or slowness of movement for five or more years
that their Parkinson's is to a degree controlled but not fully controlled so in
other words, patients who have what are called
motor complications so there are parts of the day when their
symptoms are really well controlled by medication but other times in the day where
they become slow or stiff when their medication is not working so well
My name is Lucy Mooney and I'm the lead movement disorder nurse specialist and senior
research nurse here at
Frenchay Hospital and I'm the trial co-ordinator for the GDNF trial
so I really am the first point of contact for patients
as I they make their way through the trial. When we receive an expression of
interest form here at Frenchay the first thing that we will do is we'll contact
you by phone
to undertake some preliminary screening
to see if there's the possibility that you may be suitable based on the
information you've provided
I approached Lucy Mooney the research nurse and put my name forward
my wife and I went for an interview and I was then assessed
for my suitability for the project
If they seem suitable we would then have them down to Frenchay
Hospital in Bristol
for visits to go through in detail with them what would happened in the trial
so they understand the risks because there are risks attached to
the surgery and receiving the therapy.
The surgery itself involves having
a system put in place where you have
four tubes, two on either side
which go down through the scalp, it's all under the skin when it's finished so you can't
see this part
and those tubes go down deep within the brain and
and end in the part to the brain that is particularly affected by Parkinson's
and then the GDNF or growth factor is given
down those tubes. The surgery is so good because
they don't shave your head they just
take a section across the scalp, peel it back and
drill in through the skull. They don't open the skull at all
and then they feed the pipe through the back and into the port which is set into
the bone in the side of the skull
which allows us on a monthly basis to connect a pump system outside
that then allows us to give the drug
or placebo through the port and deep down into the brain
so all that's visible is a little port behind the ear but the surgery
to put that in takes a part of a day and then the patient normally would go
home a
couple of days later. Here's the port
it's quite discreet and it's just behind the ear
and it was developed by a very good company of Mechanical Engineers
who I've got excellent faith in and they come to the
the surgery and check it through as it's being delivered and
make sure it works properly and they're a really
good bunch of guys. If you've a port in and a system in you can go swimming
or fly in an aeroplane, essentially live a normal life
and every month they come and have an infusion. The infusion is done here
in this room - but we also obviously also want to
assess how they're doing and are we seeing
improvements? And the way we do that
is that we do assessments of their clinical status every
two months or eight weeks and that's done by taking them off medication so that
can be a bit unpleasant for patients
You can't do a trial without a
placebo, being a scientist I recognise that.
It's not a proper trial if you don't have a placebo
but you should have a blind trial so
you know the only change that can happen is as a result of the drug.
It doesn't put me off because I know that when my time
of the nine months finishes which is literally in the next couple weeks
I will go on to the drug anyway. So at the end nine months
of having infusions of either the GDNF or placebo
then all of the participants will roll on
into what's called an extension phase which lasts a further nine months.
During that nine month period all of the participants will receive
GDNF so for the first nine months you've a 50/50 chance of having
the active treatment or placebo, for the second nine months all patients will have
the active GDNF treatment.
So we do appreciate that this is a very intensive trial
and that people may be put off by the time commitment but also by the
the level of involvement and the surgery itself and so forth. It may be very
daunting for them.
Initially it's quite intensive, you've got two weeks to recover from the operation, you can't go
to work
I don't work anyway but you can't do much.
The assessments take two days out because you've got
a day as you reducing your medication. One of the things I had to
do was
miss the first week of my holiday this year because I have an infusion on the
first week that the family were going abroad.
The dressing around you around the head was quite uncomfortable to wear
but it was
a good talking point. People would ask, what have you done?
I said, I've had brain surgery. What?
What have you done that for? I said, because I'm part of a trial. Why?
I said, because I want to be part of the trial and
you know it's like a sort badge of honour really.
It sounds a bit crazy but
there's a sort of altruistic
thing I wanted to do it for other people but also to be
to be recognized for having done something for somebody else is also
quite important. I think the project is
absolutely brilliant I think the team
are fantastic. Everybody I've spoken to in the team have been really
really good. They're really friendly and
as a trialist you're part of a team, the consultant
and the research nurse and the senior consultant surgeon
and it's almost first name terms because you're all doing the same thing, you're
working towards the same end
which is the result of a major trial.
So this trial isn't for everybody but I do feel that
there will be many people out there with Parkinson's who will see this as an
opportunity
to become involved in research and
potentially become involved in finding a treatment
that could benefit them but also potentially other generations to come.
You should read all the information that's on the Parkinson's UK website
regarding the trial including the full patient information leaflet
and i would suggest it's a good idea maybe to print that off and share that with your
family and friends.
If you want further information then
you can also discuss it with your specialist Parkinson's nurse
or your neurologist or GP and
if you have unanswered questions you would be free to phone us here
at Frenchay and we'll be happy to answer any questions that you have.
If you're keen on taking part in the trial you should then complete the
expression of interest
form that's on the website which will then be sent us
our team here at Frenchay and then we'll make contact with you