ClinicalTrials.gov is a website and online database of clinical research studies and information about their results. The purpose of ClinicalTrials.gov is to provide information about clinical research studies to the public, researchers, and health care professionals. The U.S. government does not review or approve the safety and science of all studies listed on this website. https://clinicaltrials.gov/
Search terms that might be helpful include: Phlebotomy Therapy, Hemochromatosis, Iron Overload, Hereditary Hemochromatosis, Blood Donation, Metal Metabolism, Inborn Errors, Metabolism, Inborn Errors, Genetic Diseases, Inborn, Iron Overload, Iron Deficiency, Anemia, Anemia of Inflammatory Response, African siderosis, Iron Metabolism Disorders, Metabolic Diseases, Hemochromatosis, or Hemosiderosis.
One of the finest ongoing investigations for hemochromatosis patients is sponsored by the National Institutes of Health Clinical Center (CC). Any confirmed C282Y/C282Y or C282Y/H63D adult (18 years old) living near Bethesda, Maryland can contact the center and inquire about enrollment.
Treatment of Hemochromatosis (ClinicalTrials.gov ID NCT00007150)
Although the majority of persons with HH meet eligibility criteria for allogeneic blood donation, until recently regulatory guidelines restricted the use of therapeutically withdrawn blood for transfusion. New regulations now permit increased flexibility in the use of such units for this purpose. The purposes of this protocol are: (1) to prospectively study the genotypic and phenotypic response to phlebotomy therapy in HH patients using the MCV/hemoglobin monitoring guide, and to validate the use of this guide in a large study cohort; (2) to evaluate the course of severe hepatic disease and rheumatologic symptoms following sustained iron depletion; and (3) to establish the safety and efficacy and document the operational issues inherent in a program to collect therapeutically withdrawn blood for use in allogeneic transfusion. These goals have as their combined target the establishment of the simplest, safest system for donor processing, phlebotomy management, and transfusion of blood drawn from HH subjects.
For enrollment of more information contact Hemaxi N Patel, R.N.
Phone Number: (301) 496-9702
THE DANGERS OF MISDIAGNOSIS
Gerry Koenig’s Story required 2 liver transplantations due to misdiagnosis.