Study Opportunity
Not Just Carriers: Experiences of X-linked Female Heterozygotes
My name is Jennifer Choi and I am a genetic counseling student at Northwestern University. I am inviting all X-linked female carriers and/or patients who are over the age of 18 and currently live in the United States to participate in a research study. The goal of this study is to bring all of the female carrier/patient voices together to better understand the needs and experiences of the X-linked carrier community. For the purposes of this study we will use the term X-linked carrier because of its popular usage, but this also includes females who have symptoms and are affected with an X-linked disease. Your participation is voluntary and will involve completing an anonymous online survey that should take about 15-20 minutes to complete. If you choose to participate in this study and complete the survey, you have the option to enter a raffle to receive one of twenty $25 Visa gift cards. If you have any questions, please contact me at jennifer.choi1@northwestern.edu. Please feel free to share the survey with other family members or members of your individual X-linked groups: https://northwestern.az1.qualtrics.com/jfe/form/SV_9nlwFltvqChHqrb.
we are here. . .
add yourself to RTG's global network of X-linked carriers
Key
● Aarskog Syndrome
● Adrenoleukodystrophy (ALD)
● Alport Syndrome (XLAS)
● Barth Syndrome (BS)
● Becker Muscular Dystrophy (BMD)
● Börjeson-Forssman-Lehmann syndrome (BFLS)
● Chronic Granulomatous Disease (CGD)
● Coffin-Lowry Syndrome (CLS)
● Creatine Transporter Deficiency (CTD)
● Duchenne Muscular Dystrophy (DMD)
● Fabry Disease
● FG1 Syndrome (FG1)
● Fragile X Syndrome (FXS)
● Hemophilia
● Hunter Syndrome
● Hyper IgM Syndrome (HIGM)
● Ichthyosis (XLI)
● Kennedy's Disease (KD)
● Lesch-Nyhan Syndrome (LNS)
● L1 Syndrome
● Menkes Disease
● Myotubular Myopathy (MTM)
● Pelizaeus-Merzbacher Disease (PMD)
● Ornithine Transcarbamylase Deficiency (OTC)
● TARP Syndrome
● Urea Cycle Disorder (UCD)
● X-Linked Dilated Cardiomyopathy (XLDCM)
● X-Linked Retinitis Pigmentosa (XLRP)
● X-Linked Severe Combined Immunodeficiency (X-SCID)
Check out our Provider Network to find or recommend a great doctor with expertise or experience in treating female carriers of your X-linked condition!
