The NBIA Research Group at OHSU has developed a new study called BPANready. The purpose of this study is to help us better understand the natural history of BPAN, meaning how symptoms appear and change over time. By studying individuals with BPAN, we also hope to identify disease markers that can be used in future clinical trials. A disease marker is any symptom or measurement that happens reliably in a disease, changes predictably with disease progression, and becomes “better” with successful treatment. A disease marker could be an MRI finding, a protein level in the blood, or a rating scale to measure symptoms or function. Natural history studies provide data that serve as the foundation for future drug trials.
Thank you for your interest in BPANready!
To Participate in BPANready You Will Need:
1.) Fluency in the English language. The study participant and any guardian or support person who is helping them should be fluent in English. We need to confirm certain milestones using medical records so the study participant’s medical records also need to be in English. Finally, all participants will need to have their doctor complete a clinical assessment tool every 6 months that is written in English.
2.) A computer with Internet access
3.) An email account (please make sure you select an email that you check regularly and will not change for the next few years because we will be sending links to the surveys and reminders through this email address)
4.) A phone number with a reliable connection that you likely won’t be changing soon. If you do change phone numbers, don’t worry, we will ask if your number has changed before you start an follow-up surveys.
5.) A parent or guardian to help you if you are age 0-17 years (it is ok to have someone help you if you are 18 or older, too).
Each study participant will need a “proxy” (parent/guardian) to read the study scales themselves and provide their opinions about the individual with BPAN. The proxy should help care for the participant and know him/her well. The proxy should be the same person for each study visit for the entire duration of the study, since the proxy will be entering his/her opinions about the research participant.
Steps of the BPANready Study
The steps below will give you an idea of the steps involved in this study. Don’t worry, we will send you reminders if you leave a survey incomplete for too long or forget to do the follow up surveys.
1.) RedCap Survey Link – By clicking on the survey link below, you will be taken to RedCap, a secure website with questions about children’s milestones
2.) Consent Forms – Before you start the BPANready survey, you will be given additional information about the study and consent forms to review/sign
3.) Demographics Page – If you agree to participate in the study, you will be taken to a demographics page that will ask questions such a name, date of birth, address, etc.
4.) Medical history – This survey will ask about your child’s past medical history and the progression of BPAN
5.) Milestones Survey – This survey will ask questions about when your child achieved certain developmental milestones
6.) Assessment Survey – Depending on your child’s age, you may be asked to complete additional rating scales about topics such as mobility and global health
7.) Phone Call With Coordinator – You will receive a call from one of our study coordinators to coordinate requesting medical records and getting a clinical assessment tool to your child’s physical therapist (or other provider)
8.) Return After Six Months – After 6 months, you will receive an email about the next survey in RedCap. Our study coordinators will conduct the follow-up survey over the phone or by emailing you a link to the survey. This will continue every 6 months until the 5 year study is complete.
9.) Sample Collection – We will also discuss collecting blood and saliva samples once a year. The collection will be done locally and then shipped to us. You will not have to pay for any step of this process.
Once you are ready to review the consent forms and/or start the study, please click on the image below:
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