As a coordinator for the Enroll-HD site in Manchester, UK, Dawn Rogers works with people who have signed up to participate for this and other HD studies. For the time being, she is also doing another job: Helping make sure that all the study sites in the UK transition smoothly from REGISTRY to Enroll-HD. As a study monitor, Dawn Rogers travels the length of the United Kingdom “from Aberdeen to Cornwall,” visiting sites that are preparing to transition to double-check that data is accurately collected and well-maintained. It’s a lot of travel, but she likes it. Because she stops in on each site individually, sooner or later she meets nearly everyone who is involved in the UK branch of the study.
Q: When you visit sites around the UK as a study monitor, what do you do?
We check the data against medical notes and family records, and meet with coordinators there. We want to make sure the records of clinical characteristics are as accurate as possible. We check through the medical notes to make sure the site staff have picked up on any history of behavioral or motor problems. The site visits also involve training—for example, on the cognitive assessments or the problem behaviors assessment. I’ve got to know a lot more people in this role. It’s lovely to feel a bigger part of the HD network.
Q: The other half of the week you’re in Manchester. What is your work like there?
I’m involved in the recruitment of patients—but actually, we have a lot of patients who want to take part, so I don’t do a lot of actively going out and finding people. I’m involved in organizing the clinics, and do the majority of the research assessments with people. I’m also involved in a number of clinical trials coming up.
Q: What’s your favorite part of the job?
I love meeting the patients! I love talking to them about research as well, and explaining about Enroll-HD. We’ve generally had a very positive vibe from patients about the study. They’re excited that it’s gone global and is going to be a much larger cohort.
Q: The assessments for Enroll-HD can be tedious for study participants. How do you make it fun?
I try to put people at ease as much as possible. We have a real continuity of staff at Manchester, so families meet with the
same people each year. They appreciate that we’ve remembered details about them. In terms of making the assessments fun, I’m not sure we’ve achieved that! We try to let people know we want to support them. We try to encourage people not to put too much pressure on themselves. You have to relax people, because it can be stressful for them. I’ve been tested on these tasks too, and I know they’re not easy. Being a rater, I was expected to be good at them, but as I tell people, I made errors too. People get a giggle out of that.
Q: What do you tell people about getting involved in research?
We let people know that it’s really useful information. A lot of people are keen to be involved in other research as well, and we let themknow that this is what we use to see if they’re suitable for those studies. It’s all connected, it’s an important network. A lot of people are keen to be involved in whatever way they can.
This story was originally published in the June 2014 issue of Enroll!