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 SLE. Data, DNA, serum, plasma, PBMCs, and transformed B cells 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 associated clinical information associated with this repository and were consented in a way that allows their data to be leveraged to address other research questions with 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 pregancy 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 and is the only population-based inception cohort of consecutitve TTP patients available. Complete patient followup is available for nearly all surviving patients. The Oklahoma TTP-HUS Registry is being migrated to a protected and more usable format in which clinical research can be performed. 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, anti-phospholipid syndrome and undifferentiated rheumatic diseases exists at OMRF. Patients are consented for collection and storage of biological materials and storage of clinical information for current and future studies. Patients are followed longitudinally and 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 MS patients were seen in this center. Patients are seen on an ongoing basis with routine longitudinal follow up. A new repository has been initiated with patients are consented 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 AI 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 development of obesity, diabetes and metabolic syndrome. 

Pediatric Type 2 Diabetes Mellitus 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 1,000 individuals serve as a healthy control for a variety of immunology studies. The repository contains connective tissue disease screening questionnaires, demographic and clinical information along with DNA, RNA, serum, plasma and PBMCs. Each control is being tested for over 300,000 SNPs located within several hundred genetic loci that show genetic association to autoimmune disease.

Pancreatic Cancer Cohort

OU Medical Center ranks in the top 10% of hospitals in the country in 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.