Caroline Easterling, a former preschool teacher and mother of 11-year-old twin girls has been in two recent DM 1 studies. She’s learned a lot along the way and has solid advice for anyone who wants to make a contribution to the greater good by taking part in research.
1. Do Your Homework
Each study and trial has unique requirements. Find out exactly what those are before you get started.
For example, drug trials may include side effects. You need to understand the potential consequences of side effects, including how they might impact your daily life during the trial.
Another issue to consider is the time commitment. One study Caroline participated in was close to home. That made it very easy to keep up with appointments. However, another was located more than an hour away. It even required some overnight hotel stays. This presented more of a challenge, especially with child care. With advance planning and family support, Caroline was able to make it work.
“You want to be able to see it through to the end, so find out all the information you can,” says Caroline. “You’ve got to make sure you can do the time commitment. Find out about any side effects ahead of time. You’ve got to be willing to deal with the side effects.”
2. Line Up Support
It’s great to have support when you try something new. Studies are no different, and your research team is there to support you. Don’t be afraid to ask questions, and let them get to know you. Caroline found that her team was a great source of support, not just for the study, but also for her DM concerns.
“It gave me the insight that people really care,” she said of the researchers she worked with. “They were very willing to answer my questions and give me information. They were happy to help me with family life stuff that I was having issues with. They talked about what may be coming next for me down the line.”
Let your friends and family know what you will be doing and that it may require some changes to your usual shared routines. Caroline and her husband knew they would need to swap some household responsibilities in order for Caroline to participate. With her husband’s support, she was able to fit the studies into their family schedule.
“Make sure your family is OK with the time that you’re asking from them. My husband had to take the kids to school and pick them up. It’s not just you who has to deal with the time," says Caroline.
3. Get a Study Buddy
Having a friend to share an experience with always makes it better, and the buddy system applies to research too.
Caroline’s sister, Mary, also has DM1 and has been in both studies with her. “I lucked out to have someone like my sister to hang out with me,” Caroline says. “We accompanied each other to each appointment.”
Do you know someone who would also be a good candidate for a trial you are considering? Let them know about it, and see if you can participate together. Or maybe you have a friend or family member who can make time to share the drive and attend appointments with you.
Challenges to research participation can be minimized with education, support and advance planning to smooth the way. Caroline emphasizes the rewards. “Research studies are important, because they give us insights that we wouldn’t otherwise have,” says Caroline. “A research study will help the greater good, and I’m hoping one may help me.”
Caroline took part in a study to find DM1 biomarkers (indicators of disease progression), through a site at the National Institutes of Health (NIH) in Bethesda, Maryland. She is also part of a trial by Ionis Pharmaceuticals to test the safety and tolerability of DMPKRx, an experimental drug that targets the underlying molecular defect in DM1, through a site in Baltimore.