All of Us Research Program
All of Us Research Program is an effort to forward personalized medicine and healthcare by enrolling over a million participants to share their health care data over several years. This includes people from across the United States and from groups that have been previously underrepresented in healthcare research. All of Us collects survey data, EHR data, and blood and urine tests over 10 years, with opportunities to update these records in the future, providing a large patient database that researchers will have access to. This diverse health database provides opportunities to study the risk factors for certain diseases and effective treatment outcomes, and educate people on clinical research that may be applicable to their individual needs.
INSIGHT CRN
INSIGHT Clinical Research Network (CRN) is a EHR repository containing over 22 million electronic health records from all over New York City and Houston, TX. This initiative is a collaboration of more than 20 medical institutions and organizations to advance healthcare research across New York City. INSIGHT contains a plethora of clinical, claims and social determinants of health (SDoH) data to assist researchers in patient centered studies and elucidate better healthcare outcomes. INSIGHT CRN is currently funded by the Patient-Centered Outcomes Research Institute (PCORI).
NCDB
The National Cancer Database (NCDB) is a comprehensive resource that provides de-identified, patient-level data on cancer diagnoses and treatments from a network of accredited cancer programs across the United States. The data is HIPAA-compliant and designed to help researchers assess and improve the quality of cancer care by offering insights into patient outcomes, treatment patterns, and disparities in care. Available through an application process to investigators affiliated with Commission on Cancer (CoC)-accredited institutions, the NCDB offers organ-specific datasets that can support a wide range of epidemiological and clinical research.
We currently work with a variety of datasets, including those focused on breast, prostate, lung, cervical, retroperitoneal, and kidney cancers. Additionally, we can request access to any other organ-specific datasets available through the NCDB.
SEER
The Sandra and Edward Meyer Cancer Center (MCC) has purchased the SEER-Medicare data linkage, which includes cancer cases diagnosed from 2002-2017 with Medicare Part A, B, and D claims through 12/31/2019. We currently have data for NHL, colorectal, breast, lung, and prostate cancers sites. SEER-Medicare includes adults 65+ years diagnosed in SEER registry regions and contains information on cancer-related characteristics, patient demographics, and health services reimbursed by Medicare Parts A and B. SEER cancer registries capture 35% of the U.S cancer population. The dataset also includes a cohort of Medicare beneficiaries residing in SEER geographic regions without cancer. Non-cancer controls were taken from the random 5% sample of Medicare beneficiaries.
Data are stored on the Data Core server and access must be granted for each individual wishing to access these data. To conduct a study with SEER-Medicare data, each investigator must complete a data use agreement and submit an application.