Travel Information for Natural History Study
One of the requirements for participating in the RCDP Natural History Study is that the patient and their caregiver must travel once every six months to the Alfred I duPont Hospital for Children, which is located in Wilmington, Delaware. The decision to move ahead with only a single clinical site was not one that was made lightly. We understood that asking families to travel to Delaware was requesting a lot and may limit participation. Ultimately, we determined that our best chance of a successful study was to base it out of one hospital which had the leading expert on RCDP. We knew that the number of patients eligible to participate would be limited and didn’t want to introduce unnecessary variation in the data by having it collected by different physician’s at different facilities.
As the sponsor of the trial, it is MLD’s goal to provide fair and equitable coverage of travel expenses to patients and their families that participate in the study. To this end, a travel policy was created and approved by the ethics review board at the AIDHC facility. When you are enrolled in the study and your visit is scheduled you will be provided with a copy of this travel policy. It outlines what expenses are covered including: air travel, mileage, hotels, meals, etc. It also outlines the approved maximum amounts for these expenses and further, what is not considered a covered expense. Please read this document carefully before you proceed with booking any travel arrangements to ensure that you are clear on what will be covered.
Scout, a patient-focused travel agency, has been contracted to handle all travel-related activities. At the time of enrollment in the trial you will also be provided information on how to contact their agents to assist you and an account for you will be set up in their system by the clinical research assistant at AIDHC. Scout should be your first resource if you have any questions about the travel policy. They have a 24-hour phone line (1-800-601-0012) which can be used to answer questions and process requests.
Once you know the date of your appointment you can start planning your travel. There are two options on how to proceed at this point: you can contact Scout and have them book your travel/hotels/etc. or you can make your own travel arrangements.
Individuals who wish to use Scout’s services for booking travel can work with their agents to book flights, hotels, etc. These expenses are then covered directly by Scout and do not require families to be out-of-pocket for charges and waiting on reimbursement. It also ensures that all charges are within the travel policy and their is no surprises at the time of reimbursement.
If you elect to make your own travel arrangements, it is important that you still contact Scout to ensure that your charges are all reimbursable. Notifying Scout makes sure they are aware of your travel dates and can assist you if anything comes up, or you have questions, while you are in transit or at the site.
All reimbursement requests are made directly through the Scout web portal. Please note that all your expenses can be processed in a single claim. You do NOT need to make a separate claim for each expense or type of expense. In fact, separate claims significantly increases the time you need to spend on the site, increases overhead as there are processing charges for each submission, and slows down the time it takes to review and approve expenses.
Regardless of the route your family decides to take, caregivers should contact Scout well in advance of their travel dates, but at a minimum must contact them two weeks prior to their clinic dates. This guarantees that they have sufficient time to reply to any questions and get any approvals required. We have had a number of instances where Scout was contacted only a few days or less before the clinic visit. This makes arranging travel extremely challenging and is likely to result in expenses that are above what is covered by the policy, which can result in unanticipated costs to the family.
We can’t thank the Rhizo families enough for making a commitment to traveling to the clinical site. Our hope is that with our travel policy and this post, we can ease the burden of making travel arrangements and reimbursement expenses. Scout is an excellent resource and is there to answer any questions you have.