OSCTR Clinical Research Registries and Repositories
Lupus Family Registry and Repository (LFRR)
The LFFR was established to assemble and distribute materials and data from families with systemic lupus erythematosus (SLE). Data, DNA, serum, plasma, PBMCs, and transformed B cell lines are collected and stored—subject to strict quality control. The LFRR contains more than 3600 lupus cases from more than 2000 families. Over 11,000 individuals have had their samples and relevant clinical information associated with this repository. Each individual consented in a way that allowed their data to be leveraged to address other research questions with the potential to study common health conditions. This includes 5000 individuals with hypertension, 1400 with diabetes, 1900 with osteoarthritis, 600 with known coronary artery disease, and 7550 with historical pregnancy data.
Oklahoma Thrombocytopenic Thrombotic Purpura (TTP-HUS) Registry
The Oklahoma TTP-HUS Registry was initiated in 1989 to better understand the cause, clinical course, and long-term outcomes of patients with TTP-HUS. More than 450 patients are included; this is the only population-based inception cohort of consecutive TTP patients. Complete patient follow-up is available for nearly all surviving patients. The Oklahoma TTP-HUS Registry is being migrated to a protected and more usable format for clinical research. In addition, a repository of biological samples is being developed through the OSCTR.
Rheumatic Disease Longitudinal Cohort
Longitudinal cohorts in SLE, rheumatoid arthritis, Sjögren's syndrome, antiphospholipid syndrome, and undifferentiated rheumatic diseases exist at the Oklahoma Medical Research Foundation (OMRF). Patients consent to the collection and storage of biological materials and storage of clinical information for current and future studies. Patients are followed longitudinally. Fresh samples are collected, and appropriate disease activity, severity, and damage indexes are performed.
Multiple Sclerosis Center of Excellence
In the first 14 months, more than 2900 unique multiple sclerosis patients were seen in this Center. Patients are seen on an ongoing basis with routine longitudinal follow-ups. A new repository has been initiated with patients consenting to a cohort study with storage of biological samples—including serum, plasma, DNA, RNA, and CSF.
Pregnancy in American Indians
In cooperation with the Chickasaw and Choctaw Nations, OUHSC researchers study American Indian pregnancy outcomes when complicated by pre-existing type 2 diabetes. Blood sugar, blood pressure, and complete demographic and medical histories are collected. Cord blood and placental samples have been stored. Furthermore, infants from mothers with and without diabetes, hypertension, and pre-eclampsia will be compared for the development of obesity, diabetes, and metabolic syndrome.
Pediatric Type 2 Diabetes Mellitus (DM2) Cohort
The NIDDK-sponsored TODAY study examined treatment options for the growing epidemic of DM2 in children and adolescents. The OUHSC Pediatric Diabetes and Endocrinology section recruited more patients than any other site, with the vast majority being American Indian. A separate TODAY study protocol collected blood and phenotypic information from more than 3200 participants diagnosed with DM2 before age 18. Data can be used to explore relationships between candidate genes and DM2, obesity, insulin resistance, and cardiovascular complications.
Oklahoma Immune Cohort
Samples and information from 1000 individuals serve as a healthy control for a variety of immunology studies. The repository contains connective tissue disease screening questionnaires, demographic and clinical data, DNA, RNA, serum, plasma, and PBMCs. Each control is tested for over 300,000 SNPs within several hundred genetic loci that show genetic association with autoimmune disease.
Pancreatic Cancer Cohort
OU Medical Center ranks in the top 10% of hospitals in the country performing Whipple procedures for pancreatic cancer. A registry of pancreatic cancer patients with surgical pathology specimens and clinical information is available and will be converted into a database format by the OSCTR.