Accommodating Your Schedule
There are many different types of clinical trials. Some only require a single visit, while others require many visits over a longer period of time. Some studies can even be completed virtually.
Study visits can also vary in length — one study might only require a quick blood draw, while another may require several hours of testing. Ask the research team about the time commitment for the trial so you know how many visits you will need to make and how long they will last.
If the trial is taking place at your care center, the research team can coordinate with your CF care team so that you can do the study visit and your regular clinic visit on the same day. Appointments can be moved to the beginning or end of the day to accommodate your work schedule.
If you believe there are other obstacles to participating, your research team might be able to engage in some creative problem-solving with you. For example, some parents have had problems with schools allowing time off for children with CF to participate in clinical trials. If that is the case, your doctor can send a letter to the school stating why the children need to participate.
Traveling to a Different Care Center
Some trials may take place at your usual care center, but other trials are happening at different care centers all over the country. You can choose to participate in a trial at a different location than your usual care center. This process is called a referral.
When you are referred into a clinical trial at a different care center, you will travel to that center for study visits and work with that center’s research team. The research team will only conduct the procedures required for the study – you will continue to receive regular clinical care from your usual care team. Our clinical trial referral roadmap walks through the process step-by-step.
If you choose to participate in a trial that is farther away, you'll need to think about travel to the study site:
- Will you drive, fly, or take other transportation to get there?
- Will you need to stay overnight in a hotel?
- Will you need to take time off from work?
- Will you need child care during the study visit?
The research team will help you coordinate these logistics, such as booking flights and hotel stays. In some cases, the research team may be able to arrange for some of the study visits to take place closer to you. For example, you may be able to get the study's routine blood draws done at a hospital close to you instead of traveling to the study site.
In this session from ResearchCon, Steph, an adult with CF, discusses her experience traveling across the country to participate in a clinical trial.
If you have questions about clinical trial referrals or would like help finding enrolling trial opportunities, contact our Clinical Trial Navigator, a designated person who provides one-on-one assistance to people with CF and their families. The Clinical Trial Navigator can provide a personalized list of clinical trials you may qualify for. If you're interested in a specific study, the Clinical Trial Navigator can facilitate contact between you and the research coordinator at a study site.
Compensation and Reimbursement
There are no fees to participate in a clinical trial, but you may incur expenses as a result of participating. Most studies offer reimbursement for these kinds of study-related expenses:
- Meals
- Mileage
- Parking
- Airfare
- Hotel stay
Some expenses, such as child care, may not be covered. Before enrolling in a trial, ask the research team if these costs will be reimbursed.
In some cases travel may be covered directly by the study sponsor and will not need to be reimbursed. For example, if the trial is more than 200 miles away, the study sponsor will usually cover the cost of flying, and the research coordinator will arrange your flights for you. For minors, the study sponsor will pay for the participant and one parent or guardian. Consideration may be given to offsetting the travel costs of a travel companion for adults. If an overnight stay is required, the study sponsor will cover the cost of a hotel.
If you are unable to cover any study-related expenses upfront, ask the research team if they can make arrangements for you. They may be able to cover certain costs — such as providing a prepaid gas card or a ride service to and from study visits — so that you don’t need to wait to be reimbursed.
How Does Compensation Work?
In addition to reimbursing your expenses, some clinical trials may compensate you for participating. This is a decision made by the trial sponsor, who is paying for the study. You will receive information about compensation during the informed consent process before the study begins.
Compensation varies and is given to pay for your time. It can help offset the costs of participating that are not reimbursed, such as time taken off from work.
For Brady, an adult with CF, study compensation was helpful for offsetting the cost of pet care while he was traveling for study visits.
The Cystic Fibrosis Foundation spearheaded an effort to ensure that those with rare diseases such as CF can receive compensation for participating in clinical trials without losing critical benefits. The Ensuring Access to Clinical Trials Act allows participants in clinical trials for rare disease therapies to receive up to $2,000 a year without that compensation affecting their eligibility for Supplemental Security Income or Medicaid benefits.
Is Clinical Trial Compensation Taxable?
The IRS requires research institutions to report compensation to clinical trial participants if the amount is $600 or more a year. Your study site will send you IRS Form 1099 as a record of this payment for you to include with your tax return. Reimbursement of expenses is not considered taxable compensation.