Osteopetrosis Research Study
INDIANA UNIVERSITY DEPARTMENT OF MEDICINE School of Medicine Drs. Michael Econs and Erik Imel from Indiana University School of Medicine and Dr. Lynda Polgreen at the Lundquist Institute are conducting research in The Natural History of Autosomal Dominant Osteopetrosis Type 2 study. The purpose of a natural history study is to further our understanding of a condition or disease. This study in particular hopes to better understand the progression of osteopetrosis in both children and adults. This is not a study where we are studying treatment so no one will get any medications. Some of you have participated in “family reunions” in the past. These are on hold due to COVID-19. We are conducting a single day (you will not stay overnight) in-person study visit at Indiana University. We are also doing a second study, which does not require any travel because it is an online "Registry". A registry is a type of database that collects information from people diagnosed with a specific disease, in this case osteopetrosis. This registry collects information (clinical and other) from people diagnosed with osteopetrosis in order to evaluate specified outcomes related to your health and how osteopetrosis impacts your quality of life. Through participation in this registry you will also be given the opportunity to allow us to contact you in the future for additional studies. You have the opportunity to participate in one or the other, or both. In order to qualify, you or your child must be diagnosed with Autosomal Dominant Osteopetrosis (ADO) or autosomal recessive osteopetrosis (ARO) or Autosomal Recessive Osteopetrosis (aka Severe Infantile Osteopetrosis) or have a family member related by blood with either form of osteopetrosis. To learn more information about the In-Person Study Visits at Indiana University School of Medicine– please click the following link: https://research.indianactsi.org/clinicaltrial/10889/autosomal-dominant-osteopetrosis-ado-autosomal-dominant-osteopetrosis-a-natural-history-study/ Please contact study staff to discuss options for participation Marian Hart, RN 317-948-8346 Amy Katz, MPH 317-948-2601 endobone@iupui.edu Osteopetrosis Registry Opportunity
Dr. Lynda Polgreen at the Lundquist Institute for Biomedical Innovation at the Harbor-UCLA Medical Center in Torrance, California has officially launched an observational research study called a "Registry". A registry is an organized system that uses observational study methods to collect data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition or exposures. By collecting data on your health, we hope to continue to improve patient outcomes and medical care for those with osteopetrosis. This research is funded by a grant from the National Institutes of Health and the Susan Scott Foundation. Please read the information below about this registry to decide if you and/or your child want to participate.
If you have questions about the study, please call (310) 357-9023 or email Dr. Polgreen at lpolgreen@lundquist.org If you would like to participate, please click the following link: https://redcap.link/osteopetrosis_registry |
Types and Genetics |
"A Guide to Osteopetrosis
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