Hi, my name's Leah.
I'm here at the Barberry in Birmingham, and I'm about to take part in the Enroll research.
Hi, my name's Liam.
I'm here for the Enroll-HD appointment
which I come to every year.
My name is Elsa, I'm a research fellow as part of the Huntington's disease team
here in Birmingham.
Enroll-HD is a worldwide longitudinal observational study,
and it's for HD families to take part in.
The aim of it is to learn about how the disease changes over time.
If you just want to take a seat there Leah, please?
Great, thank you.
Thank you for coming.
I guess just before we get started
I just want to make sure that you're happy to still take part in Enroll and the research?
- Yep.
- Do you have any questions before we get started? - No.
You sure? Great, okay.
[Leah] The study involves different tests, so to start with,
Elsa asks me loads of questions about
my moods, my mental health, what's happened in the last year.
She asks me just different behavioural questions about myself, my life and what's going on.
- In terms of working, are you still working your job to your full capacity?
- Yeah.
- You've not had to change anything at work or anything like that? OK.
[Leah] Then we do different cognitive tests, things like,
name as many words that begin with the letter R as you can in two minutes.
And all of a sudden you forget every word that begins with the letter R.
- The next test is the letter A.
So again as many words you can think of that begin
with the letter A, no names of people or places.
OK, so you ready?
And... go.
Act.
Anchor.
Argue.
[Leah] You do the same motor tests every year that you come back,
so that they can get an idea over the time how you progress.
So I walk in a straight line,
and touch my fingers together and those sorts of things.
[Liam] I think the first time I came to the study, I was a bit nervous
because I wasn't sure what it entailed.
And actually, it was much simpler than I thought it would be.
- OK, so if you could keep your head nice and still
and follow the pen with your eyes.
[Liam] I sometimes find aspects of the appointments a little bit tiring.
So some of the motor neuron tests and the reading can be a bit tiring,
especially at the moment wearing masks and things, that can be bit draining.
- This one's a little bit different.
I just want you to read the words 'red', 'green' or 'blue', please.
Are you ready? Yes. OK, and go.
- Red, blue, green, red, blue, red, green., green, blue, blue.
When I first heard about this study, I was really keen to get involved.
It's had a big impact on my family, Huntington's has.
My parents help out loads.
My mum is really keen to do whatever she can.
And this just felt like something that I could do as well to help.
- That's great. Thank you.
So we'll do the bloods and things now, and we'll do that next door.
OK, great.
Thank you so much.
[Leah] These sorts of studies, the questions they ask
and the tasks that you have to do, for people who are struggling
with Huntington's disease or the family members who are struggling,
it helps bring it to the surface to have that discussion,
to get it out in the open rather than keeping it bottled up inside.
Obviously, different people have different circumstances,
and it's not for everybody.
Maybe for some people, they don't think about Huntington's disease all year.
And then they come to this and it's all about Huntington's disease.
So it really brings it home for those people.
Sometimes people are conscious about their performance on the tasks.
So, 'am I doing as well as I did last year?'
Sometimes it makes me think about
why I'm doing it and that can feel a bit heavy sometimes.
But there's always that sense that you're helping to make a difference
and possibly create treatments
and things in the future.
[Elsa] Enroll-HD also operates
as a way of registering your interest in further research or drug trials.
I've had an MRI scan taken and
a lumbar puncture taken,
and I got involved
with those studies through Enroll.
My mum's had lumbar punctures.
My dad and I have had them, and there's more concerns around that
because it is more invasive and it has more side effects potentially.
Some of them are a little bit emotionally draining or physically draining
like the lumbar puncture.
But I'm glad that I did them
because I think it's really important if I'm already involved to try
and give as much as I can and take as many opportunities as I can to help.
I hope Enroll-HD impacts the way that we understand Huntington's disease.
I hope that it stimulates further research, it makes research
more accessible to developing ways of managing the disease.
And obviously, overall, I'd really love for it
to contribute to developing a treatment that can manage the disease.
So that is everything.
Thank you so much.
Do you have any questions or anything?
- No, I think that's everything. Thank you.
- Okay, cool.
Well, I guess I'll see you next year at a similar time.
It was so nice to see you, thank you for coming.
[Leah] We've just had our appointments.
I enjoy it, I enjoy coming in and I like chatting to Elsa,
we always have a little catch up and a gossip, and it's interesting
the things that they ask you and the different tasks you have to do.
It's not a chore.
If you're doing this and you're doing other trials
and things and helping out.,
it makes you feel like you're
- Giving something back at least.
- Yeah, yeah.
Yeah.
And helping people in the future.
And so,
yeah, it's worthwhile.