Data and Measurement Core
The Data and Measurement Core, co-led by Jeanne Mandelblatt, Judith Carroll, Jaeil Ahn, and Jamie Robinson, will provide support for the identification of research-ready resources and consultation on their use. These resources can be leveraged for pilot analyses to:
1) generate hypotheses, test multi-level/regional or study-level influences on outcomes and support larger studies,
2) facilitate meta-analysis of effects of multi-level outcomes factors across studies,
3) rigorously justify pooling data across homogenous populations using the same/exchangeable measures, and
4) harmonize and integrate data across studies that include disparate measures of comparable constructs within our multi-level framework.
For any questions, concerns, or thoughts regarding the Data and Measurement Core, please fill out the Inquiry Form by clicking the button below.
We are always trying to improve our I-REACH Cores and Programs to best support your research and careers. To provide constructive feedback regarding the Data and Measurement Core, please fill out the User Satisfaction Survey below.
Contact us at ireach@georgetown.edu with any additional questions.
Cancer and Aging, Geriatrics, Survivorship, Policy, Cancer Outcomes. Dr. Mandelblatt’s research focuses on heterogeneity in life course aging and the effects of cancer and its treatments on clinically important survivorship outcomes, including functional, cognitive, and physical aging and development of frailty.
Dr. Carroll’s work focuses on examining multi-level determinants of aging, integrating knowledge about biological aging processes and health behaviors, and understanding the bidirectional relationship of these factors and diseases like cancer on physical and cognitive outcomes.
Bioinformatics, Biostatistics, Genetic Epidemiology, Glycoscience. Dr. Ahn’s research explores cognitive aging of breast cancer survivors, clinical trials and machine learning to evaluate aging outcomes.
Social Epidemiology, Cancer Survivorship Outcomes, Social Risks and Financial Hardship, Area-Level Social Determinants of Health. Dr. Robinson’s research uses mixed methods and geospatial approaches to explore experiences of end-of-life care and bereavement support outcomes in cancer patients and their informal (unpaid) caregivers. She has a particular interest in furthering understanding of the burden of death administration (e.g., accessing a preferred place of death, contacting financial institutions) in aging, lower income, and medically marginalized cancer patient and caregiver populations.
Studies that will be available in the I-REACH database include, but are not limited to:
I-REACH Investigator Co-Lead Studies:
Thinking and Living with Cancer (TLC) Study: The goal of the TLC Study is to evaluate the impact of systemic therapy on the mind (“cognition”) in older breast cancer patients. Breast cancer is a major health problem facing older women and chemotherapy and hormonal treatments are some of the possible treatments offered to women. Because very few women 60 years of age and older have been invited to join past breast cancer studies, we don’t have much information available on the effect of chemotherapy and hormonal treatment on the mind (“cognition”). We enroll women over 60 who have recently been diagnosed with breast cancer, as well as healthy controls. This study is being done nationally, with recruiting sites at Georgetown University, Memorial Sloan-Kettering, Moffitt Cancer Center, and Indiana University.
Detroit ROCS: Population-based cohort of 5,073 cancer survivors residing in metropolitan Detroit at the time of diagnosis and 1,057 of their caregivers.
Data
– Baseline survey and annual follow-up through online, phone or mailed questionnaires
– Questionnaires include demographics, medical history, family history of cancer, quality of life endpoints, financial status (see website for questionnaires)
Biospecimens
– Blood collected for germline DNA and RNA and plasma
– Saliva collected when blood not available for germline DNA
– FFPE tumor tissue collected for tumor DNA and RNA
Cognitive impairment and biological age: Cohort of 197 Chinese and 195 Non-Hispanic White cancer patients interviewed at baseline and 6 months. Biospecimens available include plasma and buffy coat.
Dataverse: population-based sample of 5,500 adult cancer patients aged 18-24. PROMIS questionnaires are acquired through mailed or phone surveys at 6-13 months post diagnosis and 6 months post-baseline survey.
Molecularly Enhanced Lung Cancer Database (MELD): Cohort of 10,000 lung cancer patients residing in the New York Metropolitan Area. Electronic Health Record extracted data includes cancer registry, NLP derived elements, external environment data, cancer history, treatment, recurrence, DAI, comorbidities, polypharmacy, and metabolic health.
Other National Studies:
IADR
Michigan-Wayne State RCMAR
U Mass
NCI Cohort Studies: The NCI Cohort Consortium is an extramural-intramural partnership formed by the National Cancer Institute (NCI) to address the need for large-scale collaborations to pool the large quantity of data and biospecimens necessary to conduct a wide range of cancer studies. Through its collaborative network of investigators, the Consortium provides a coordinated, interdisciplinary approach to tackling important scientific questions, economies of scale, and opportunities to quicken the pace of research.
Women’s Health Initiative (WHI)
Surveillance, Epidemiology and End Results (SEER) Program: The SEER Program provides information on cancer statistics in an effort to reduce the cancer burden in the U.S. population. Population-based cancer registry data are collected at sites across the U.S. Cancer incidence, mortality and survival statistics are available.
SEER-Medicare linked database: The SEER-Medicare data reflect the linkage of two large population-based sources of data that provide detailed information about elderly persons with cancer, which can be used for an array of epidemiological and health services research.
SEER-Medicare Health Outcomes Survey Linked Database: The SEER-MHOS database links two large population-based sources of data that provide detailed information about elderly persons with cancer. The data come from SEER’s cancer registries that collect clinical, demographic and cause of death information for persons with cancer and the Medicare Health Outcomes Survey (MHOS) that provides information about the health-related quality of life (HRQOL) of Medicare Advantage Organization (MAO) enrollees.
SEER-Consumer Assessment of Healthcare Providers and Systems (SEER-CAHPS) Linked Data Resource: The SEER-CAHPS data set links 3 types of data: clinical (SEER), survey (CAHPS), and administrative/billing (Medicare claims and enrollment files). The data are linked through the collaborative efforts of NCI, the SEER registries, and CMS.
SEER-Medicaid Linked Data Resource: The SEER-Medicaid data reflect the linkage of two large population-based sources of data that provide information about Medicaid beneficiaries with cancer. The data come from SEER and the Centers for Medicare & Medicaid (CMS) Medicaid enrollment information from all 50 states and the District of Columbia.
All of Us Research Hub: All of Us is a prospective cohort study aimed at enrolling a diverse group of one million individuals aged 18 years and older across the US. As of March 2024, approximately 534,000 individuals, consented, agreed to share electronic health records, completed the first three surveys, provided physical measurements, and donated a biospecimen. Visit the website for more information about the cohort and resources available to researchers.
Connect for Cancer Prevention Study: The NCI Connect for Cancer Prevention Cohort is a prospective cohort study in the US aimed at enrolling 200,000 individuals 30-70 years with no history of invasive cancer other than non-melanoma skin cancer. Recruitment focuses on recruiting diverse individuals from different geographic areas. Participants are asked to complete an online questionnaire and donate blood biospecimens at baseline and periodically throughout the duration of follow-up, as well as provide access to their electronic health records (EHRs). Information on cancer diagnoses is obtained via tumor registries and EHRs. Visit the website for more information about the cohort and resources available to researchers.