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What does it take to participate in clinical research?
Participating in ALS clinical research takes time, energy, and sometimes money. If you’re considering whether you might want to participate in clinical research, think through the resources you and your loved ones are willing and able to commit — and talk it over with them.
A few possible commitments needed to participate in clinical research are listed below. Take a look and mark the commitments that are most relevant to you.
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Clinical research takes time and effort. In some clinical research studies, you can participate remotely through a smartphone, tablet, or computer. But other studies require that participants keep regular, in-person study appointments at a study site — usually a hospital or medical center. (Even if the hospital or medical center has more than one location in your area, you’ll typically need to return to the specific location where researchers are conducting the study for all your appointments.)
If your life is busy with family, work, travel, or other commitments or if your ALS makes getting around difficult, it could be more challenging to make multiple trips to the study location. For example, you may need to take time off work or find someone to care for your children or other family members while you’re away. Keep in mind that the study’s informed consent form will tell you how many appointments are required, but you may not get final appointment dates before the study begins.
During some study appointments, you may need to have medical tests done, like blood draws or lumbar punctures. In a lumbar puncture (also called a spinal tap), a medical provider will insert a needle into your spine to take a small sample of fluid. If you have any questions about the medical tests required for a study, you can always ask your provider or the research team.
Some clinical research studies will pay you back for travel, lodging, meals, and parking costs, while others may provide you a stipend or allowance for your participation.
No clinical research study should require you to pay upfront to join. The research team will explain any out-of-pocket expenses you’ll be expected to pay — and if you have questions or concerns, ask.
Some people living with ALS ask a support person, like a spouse, life partner, family member, or close friend, to help them participate in clinical research. This can include help with:
- Getting to and from study appointments
- Asking questions and taking notes during study appointments
- Following study instructions, like how to take new medicines
It’s a good idea to discuss the study appointments (and travel plans, if needed) with your support person ahead of time, so they’ll know what to expect. For example, they may need to take time off work or make special arrangements to join you at your appointments.