Frequently Asked Questions
Where can I get more information about HIBM?
Genetics Home Reference:
Advancement of Research for Myopathies (ARM):
Neuromuscular Disease Foundation (NDF):
When will the study be starting?
We are screening patients NOW and we expect to start bringing patients to the NIH starting in September 2011.
Where will I have to go to participate in the study?
You will be admitted to the NIH Clinical center for this study.
Will I get paid to participate in this study?
You will not receive any direct compensation for your participation.
Will I have to pay for my travel expenses to the clinical study center?
All travel expenses, including international travel, will be paid by the NIH.
Can I bring a companion? Would his/her travel will be paid for?
Yes, we will pay for a companion if it is medically indicated.
What are the benefits to participating in this study?
By participating in this study, you will help to improve our understanding of HIBM, which is an important contribution to families and individuals affected by this condition. This study will provide information that will help all clinical trials that explore new therapies for HIBM.
Does participating in the HIBM Natural History Study mean that I am automatically enrolled in the ManNAc trial?
No it does not. Planning for the ManNAc trial for HIBM is ongoing. However, the inclusion and exclusion criteria for the ManNAc trial might be different from those for this natural history study.
Why should I stop taking ManNAc while I participate in this study?
We need to know your muscle status at baseline (i.e., without ManNAc) and would like to compare it with your muscle status when you were receiving ManNAc.
Can I participate in this study and participate in the sialic acid trial at the same time?
Yes, you can participate in our study. Contact us (301-402-2324) if you have more questions about this.
I have multiple family members with HIBM, can we all participate?
Yes! As long as each person has evidence of a diagnosis of HIBM and signs informed consent, you may all participate. Furthermore, we can coordinate to bring you and your siblings or friends to the study at the same time.
How do we participate?
You simply need to fill out the form for participation (see link on left navigation bar) and email the form to us. You may also email or call us to enroll HIBMStudy@mail.nih.gov.
Can I fill out the form myself?
If you are an adult patient, you may fill out the form/survey yourself.
Is there a method that is preferred for me to fill out the form?
The preferred method is the method that is most convenient for you. We are happy to accommodate you via phone, hard copy, or computer.
Will anyone know that I took part in this study?
Only those directly involved in this research at NIH will know of your participation in this study.
Where will the study take place?
At the National Institutes of Health Clinical Center in Bethesda, MD. For more information, visit http://clinicalcenter.nih.gov/ or what to expect from your visit.
What will you do with the information you learn about me and/or my family who participate in this study?
We will analyze this information in a composite fashion, with no names attached to the report.