Registry Overview and FAQs
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THE FOUNDATION FIGHTING BLINDNESS NATIONAL REGISTRY OVERVIEW / FAQs Overview Many people affected by a retinal degeneration have asked “What can I do to help research?” The Foundation Fighting Blindness (FFB) National Registry provides a meaningful way to make a personal contribution to research and to the defeat of retinal degenerations in current and future generations. The National Registry is a database that is used to collect personal, family and medical information on individuals in the US affected by retinitis pigmentosa, Usher syndrome, macular degeneration and related inherited retinal disorders. With this information, FFB can assist researchers with locating patients who may meet the eligibility criteria for their studies. To enroll in the registry, individuals complete a form containing medical information about themselves and their family. Each affected family member who would like to participate would need to complete a registry form and provide consent before their name would be added to the registry. A study that involved registry enrollees led to the use of vitamin A palmitate as a means of slowing the progression of RP. This study involved 600 research volunteers, many of whom were recruited from The Foundation’s registry. Blood samples from registry enrollees and other volunteers have enabled scientists to find many genes responsible for RP, Usher syndrome and Stargardt disease. Current clinical trials are proving that, for some diseases, gene identification may lead to finding the cause of and treatment for inherited retinal degenerations. Currently, more than 10,000 adults and children with retinal degenerative diseases are registered. The success of the program is due to the willingness of potential research volunteers to take part. Q: What is the purpose of the National Registry? A: The purpose of the Foundation Fighting Blindness National Registry is to identify and collect personal, medical and family information on individuals and families with inherited retinal degenerative diseases. Those who complete a registry questionnaire give permission to the Foundation to contact them regarding possible participation in clinical and research studies. Q: Who should return a completed registry form? A: People who are affected by a retinal degenerative disease such as RP, Usher syndrome, macular degeneration, or a related inherited back of the eye (e.g.- retinal) disorder should complete and return a registry. Q: How do I complete a registry form? A: Paper copies of the form are available by calling Constituent Services at the Foundation Fighting Blindness at 800-683-5555. There is an online version of the form on the Foundation’s website, www.FightBlindness.org. Q: What if more than one family member is affected? A: When more than one family member is affected, each will need to complete a separate paper form or log on separately to the Foundation’s website. To obtain additional paper copies, call the Foundation or a blank registry form can be photocopied. Each form should contain information on only one person. Q: Will completion of a registry form guarantee that I will be asked to participate in a research study, and if so, how soon? A: Not necessarily. Researchers follow strict guidelines and inclusion and exclusion criteria in selecting research subjects appropriate for each study. Factors used to select participants for studies may include age, type of retinal degeneration, stage of the disease, medical history and geographic area. Sometimes researchers don’t need assistance from FFB in meeting the recruitment quota for their study. It’s important to know that being part of the FFB Registry does not mean you’ll be notified of every clinical trial or study related to your retinal degenerative disease. If your personal information indicates you may be eligible for a research study and the researcher has asked for the Foundation’s help in recruiting, you will receive information directly from FFB. This may be soon after submitting a registry form, for a current study, or possibly not for a long time, for a future study. If you are never chosen to participate in a research study, do not feel slighted. Information learned from studies ultimately benefits everyone with inherited retinal degenerations. Q: Is it necessary to update my registry every year by completing and returning another form? A: No. If you need to update your registry because of changes in your personal, medical or family information such as name, address or diagnosis, contact the Registry Coordinator. Q: Where can I find more information about the National Registry? A: If you have additional questions, contact the Registry Coordinator or visit the FFB website, www.FightBlindness.org.
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