The PHO is a public health research, training, and informatics center. Faculty and students engage in population-based research both as primary investigators and as collaborators. 

A typical study requires the extensive health informatics expertise of PHO faculty, most of who hold PhD’s in quantitative fields such as biostatistics and collectively have many years of experience in health science research. Our research is conducted in the context of projects that first require development of data collection, management and linkage system. Other research efforts focus on already existing databases available from other sources, such as the National Center for Health Statistics or the Radiation Effects Research Foundation.

Areas of Current Research

  • Development of Bivariate Normal Limits for Newborn Screening for Early Infantile Krabbe disease
  • Estimated mortality and incidence rates of Krabbe disease and related leukodystrophies and lysosomal storage disorders
  • Creation and maintenance of a database containing ECMC trauma registry data


  • The Hunter James Kelly Research Institute at the UB Center of Excellence for Bioinformatics and Life Sciences
  • Surgery Department at the Erie County Medical Center
  • Community Health Center of Buffalo

Areas of Past Research

  • Mortality trends in the State of New York
  • Cardio-metabolic risk in Western New York
  • Radiation effects on atomic bomb survivors in Hiroshima and Nagasaki, Japan
  • Early childhood outcomes among 0-3 year old children who are disabled, developmentally delayed, or are diagnosed with Autism


Early Childhood Outcomes (ECO)

The Early Childhood Outcomes (ECO) project was funded through an MOU with the New York State Department of Health (NYS DOH), Division of Family Health, Bureau of Early Intervention. The Population Health Observatory (PHO) worked in partnership with the University at Binghamton, Institute for Child Development (UBN-ICD) to support the Bureau's Early Intervention Program (EIP) research team. We developed the IT and human infrastructure for data collection, management, analysis and reporting necessary to measure and evaluate child and family outcomes of program participants. Staff of the PHO were responsible for data entry, cleaning, and quality control; data management and security; and data analyses necessary to fulfill U.S. Department of Education, Office of Special Education Programs (OSEP) reporting requirements. PHO faculty collaborated with the EIP research team to annually evaluate program performance as defined in the EIP State Performance Plan. Staff of UBN-ICD were responsible for the development of training and technical assistance materials and provision of ongoing support for municipalities, EIP providers, and families related to the local collection of child outcomes data for children enrolled in sample cohorts.

General Supervision Enhancement Grant Application (GSEG)

Krabbe Registry

In September of 2008, the PHO began collaborations with the Hunter James Kelly Research Institute at the UB Center of Excellence in Bioinformatics and Life Sciences to identify risk factors, genetic causes, and course of Krabbe Disease. Krabbe Disease is devastating yet little is known about it, because of a paucity of data for research. The goal of this project is to develop National and International research databases to better study this rare disease. Krabbe Disease registries are being constructed through a combination of an International active surveillance network of pediatric neurologists and death certificate surveillance in the United States. Questionnaires will be completed by consenting families who have lost a loved one to Krabbe and their doctors will supply medical records for entry to the databases. Follow up clinical evaluations and DNA sequencing will be done to identify genetic mutations that are associated with clinical course. The PHO functions as the bioinformatics and statistical core of this project and conducts epidemiological research based on death certificate records.

Radiation Effects

In November of 2006, the PHO and the Department of Biostatistics at the University at Buffalo initiated a collaboration with the Radiation Effects Research Foundation (RERF) in Hiroshima, Japan. This is an ongoing collaboration on multiple projects. The first project involved an International consortium of statisticians who are developing methods to adjust for measurement error in estimates of radiation doses suffered by survivors of the atomic bombings of Hiroshima and Nagasaki at the end of World War II. Measurement error is suspected to cause an under-estimation of radiation effects on health. This is a particularly important issue, because RERF research is the single most important source of information used by radiation protection agencies worldwide to set acceptable occupational exposure limits. This project has been a rich source of topics for PhD dissertations in biostatistics

The PHO also collaborates with RERF scientists to test a postulated model describing direct and indirect effects of health behaviors on cardio-metabolic risk that was developed from the PHO’s previous investigation (Pak, et al.) based on the Western New York Health Study (WNYHS) database.

RERF’s Adult Health Study (AHS) cohort of 22,000 atomic bomb survivors served as a validation sample in this investigation. Results from the RERF data were consistent with those from the WNYHS. Work on this topic with RERF scientists is ongoing.

A third project within the RERF collaboration was a study to identify factors that reflect varying sensitivity of atomic bomb survivors to radiation exposure.

A fourth project focused on standardizing medical measurements taken AHS participants over the 50 year period since initiation of the study in 1958. This is a difficult, yet important, problem. The AHS database contains a wealth of information, but use of the data in longitudinal research is limited by changing scales of measurement over time and limited overlapping measures to use for calibration. We will attempt to use the overlapping measures and correlations among variables to derive methods for calibrating to the most recent measuring device.

Cardiometabolic Risk

The Cardiometabolic Risk Project involves studies to develop a cardiometabolic risk index (CMRI), develop statistical methods for assessing direct and indirect effects of sets of causally ordered variables on CMRI, and use the methods to fully describe the effects of health behaviors or radiation dose on cardiometabolic risk. The CMRI was first developed from the Western New York Health Study (WNYHS) control cohort and a postulated model describing potential direct and indirect effects of demographic, behavioral, anthropometric, and blood measures on CMRI was formulated from extensive data mining of the WNYHS data set. The CMRI and the postulated model were then validated using the Adult Health Study (AHS(link to RERF website)) cohort of atomic bomb survivors. This project has provided the topic for one dissertation in biostatistics, to date, and is expected to be a rich source of future topics.

The Western New York Health Study was originally developed as a series of case control studies to investigate the associations between health outcomes and a rich set of socio-demographic, physical, psychosocial, and behavioral variables, including alcohol consumption and lifetime drinking patterns. Population based controls were randomly selected from Erie and Niagara Counties in Western New York. Between 1996 and 2001, a total of 4,065 residents greater than 35 years of age consented to participate in the study. Study participants underwent comprehensive interview, physical exam and lab tests to evaluate personal and family medical history, CVD and diabetes risk factors, and current and lifetime behaviors. The dataset contains a rich set of variables on alcohol consumption, including lifetime drinking patterns. The Cognitive Life Time Drinking History questionnaire was developed by specifically for this study. Longitudinal follow up and death certificate surveillance are planned for this population based cohort.

Western New York Mortality Studies

The Population Health Observatory has requested and received permission from the Center for Disease Control and Prevention to use National death certificate summary data by county to conduct a series of studies to describe mortality trends in Western New York and statewide. One study on overall mortality trends in the region compared to those statewide was completed in the fall of 2006. Results were reported to the Western New York Public Health Alliance. As a result of that presentation we have initiated a second study in collaboration with Cheryl Moore of the Erie County Health Department and Professor Paresh Dandona of the UB School of Medicine and Biomedical Sciences to study Type II diabetes mortality trends in New York by age group. We also studied death rates due to endometrial cancer in recent years to determine whether proximity to a comprehensive cancer center reduced the risk of mortality due to endometrial cancer. This study was motivated by the fact that the death of many endometrial cancer patients can be prevented by early high quality care. Therefore, death rates reflect the timing and quality of care. We hypothesize that the quality of care generally is better among patients who have easy access to comprehensive cancer centers, with a high volume of such patients compared with that seen at community hospitals.

Community Health/Risk Assessment

The PHO was contracted by the Erie County Health Department and the Western New York Public Health Alliance to complete a community health assessment report for Erie County in 2004 and a health risk assessment for WNY in 2006. Such reports are produced periodically and will be posted on this web site as completed. Ad hoc reports on various indicators of population health in WNY, such as the mortality report below, also will be published as they are produced.

Reports and Publications

Journal Articles

  • Arora, P, Jalal, K, Gupta, A, Carter, RL, Lohr, JW (2017). Progression of kidney disease in stage 3 and 4 chronic kidney disease elderly patients. International Urology and Neph. doi:10.1007/s11255-017-1543-9
  • Carter, RL, Wrabetz, L, Jalal, K, Orsini, JJ, Barczykowski, AL, Matern, D, Langan, TJ (2016).  Can psychosine and galactocerebrosidase activity predict early‐infantile Krabbe's disease presymptomatically? Journal of Neuroscience Research, 94 (11): 1084-1093.
  • Langan, TJ, Barcykowski, AL, Dare, J, Pannullo, EC, Muscarella, L, Carter, RL (2016). Evidence for improved survival in postsymptomatic stem cell‐transplanted patients with Krabbe's disease. Journal of Neuroscience Research, 94 (11): 1189-1194.
  • Arora, P, Golzy, M, Gupta, A, Carter, RL, and Lohr, JW (2016). Proton pump inhibitors are associated with increased odds of development of chronic kidney disease. Submitted to BMC Nephrology, 17 (1); 112.
  • Tekwe, C.D., Carter, R.L., Cullings, H.M. (2016). Generalized Multiple Indicators and Multiple Causes Measurement Error Models. Statistical Modeling, 16 (2), 140-159.
  • Patel, N, Golzy, M, Nainani, N, Nader, ND, Carter, RL, Lohr, JW, Arora, P (2016). Prevalence of various comorbidities among veterans with chronic kidney disease and its comparison with other datasets. Renal Failure, 38 (2): 204-208.
  • Arora P, Golzy M, Patel N, Quigg R, Carter RL, Lohr JW. (2015) Renin angiotensin system blockers in non-diabetic non-proteinuric elderly patient with chronic kidney disease. Journal of the American Geriatrics Society, 63 (12): 2478-2484.
  • Patel N, Golzy M, Nainani N, Nader D, Carter RL, Lohr JW, Arora P. (2015) Prevalence of various comorbidities among veterans with chronic kidney disease and its comparison with other datasets. Renal Failure, 38 (2): 204-208. DOI:10.3109/0886022X.2015.1117924.
  • Jalal, K. and Carter, R. L. (2015), Mortality incidence estimation using federal death certificate and natality data with an application to Tay–Sachs disease. Biom. J., 57: 885–896. doi: 10.1002/bimj.201400008
  • Lohr, JW, Golzy, M, Carter, RL, Arora, P. (2015). Elevated systolic blood pressure is associated with increased incidence of chronic kidney disease but not mortality in elderly veterans. Journal of the American Society of Hypertension, Volume 9, Issue 1, 29-37, ISSN 1933-1711,
  • Tekwe, CD, Carter, RL, Cullings, HM, Carroll, RJ (2014). Multiple indicators, multiple Developmental and causes measurement error models. Statist. Med. 33 (25), 4469-4481. DOI:10.1002/sim.6243.
  • Abdelhalim, A. N., Alberico, R. A., Barczykowski, A. L., & Duffner, P. K. (2014). Patterns of magnetic resonance imaging abnormalities in symptomatic patients with Krabbe disease correspond to phenotype. Pediatric neurology50(2), 127-134.
  • Foss, A.H., Duffner, P.K., Carter, R.L.* (2013) Lifetime risk estimators in epidemiological studies of Krabbe Disease: Review and Monte Carlo comparison. Rare Diseases 2013; 1:e25212
  • Kang, L., Carter, R.L., Darcy, K., Kauderer, J. (2013). Monte Carlo EM Algorithm for the Estimation of Latent Class Models with Application to Assess Accuracy of Diagnostic Tests for Cervical Neoplasia in Women with AGC. J Applied Stat. 40 (12), 2699-2719.
  • Golzy, M., Carter. R.L., Bessette, R.W. (2013). Renal function, calcium regulation, and time to hospitalization of patients with chronic kidney disease. BMC Nephrology, 14:154. DOI:10.1186/10.1186/1471-2369-14-154.
  • Fabiano, G.A., Pelham Jr, W.E., Majumdar, A., Evans, S.W., Manos, M.J., Caserta, D., Girio-Herreram, E.L., Pisecco, S., Hannah, J.N., Carter. R.L. (2013). Elementary and Middle School Teacher Perceptions of Attention-Deficit/Hyperactivity Disorder Prevalence. Child & Youth Care Forum, Springer 1-13. 
  • Carter, R.L., Kang, L., Darcy, K.M., Kauderer, J., Liao, S-Y., Rodgers, W. H., Walker, J.L., Lankes, H., Dunn, T., Stanbridge, E.J. (2012). A Comparison of Diagnostic Accuracy of High-Risk Human Papillomavirus 1 (H-HPV), H-HPV Genotype 2 (H-HPVG), Carbonic Anhydrase IX (CA-IX), and Histological Diagnoses of Cervical Dysplasia/Neoplasia 3 in Women with a Cytologic Diagnosis of Atypical Glandular Cells of Undetermined Significance 4 (AGC-NOS): A Gynecologic Oncology Group (GOG) Study. Cancer Causes and Control 23(12), 2013-2021.
  • Jalal, K., Carter, R.L., Yan, L., Barczykowski, A., Duffner, P. (2012). Does Galactocerebrosidase (GALC) Enzyme Activity Predict Phenotype in Patients with Krabbe Disease? Pediatric Neurology 47, 324-329.
  • Duffner, P. K., Granger, C., Lyon, N., Niewczyk, P., Barczykowski, A., Bauer, S., & Msall, M. E. (2012). Developmental and functional outcomes in children with a positive newborn screen for Krabbe disease: a pilot study of a phone-based interview surveillance technique. The Journal of pediatrics161(2), 258-263.
  • Barczykowski, A. L., Foss, A. H., Duffner, P. K., Yan, L. and Carter, R. L. (2012). Death rates in the U.S. due to Krabbe disease and related leukodystrophy and lysosomal storage diseases. Am. J. Med. Genet. PartA 158A:2835-2842.
  • Duffner, P.K., Barczykowski, A., Kay, D. M., Jalal, K, Yan, L., Abdelhalim, A., Gill, S., Gill, A. L.,, Randy Carter, R.L. (2012). Later Onset Phenotypes of Krabbe disease: Results of the World-Wide Registry. Pediatric Neurology, 46:5, 298-306.
  • Bessette, R.W.and Carter, R.L. (2011). Relating Illness Complexity and Outcome to Reimbursement in CKD Patients.International Journal of Nephrology and Renovascular Disease, 4, 121-130.
  • Bessette, R.W. and Carter, R.L. (2011). Predicting Hospital Cost in CKD Patients through Blood Chemistry Values. BMC Nephrology, 12:65, 1-8.
  • Duffner, P., Barczykowski, A., Jalal, K., Yan, L., Carter, R.L. (2011). Early Infantile Krabbe Disease (EIKD): Results from the World-Wide Krabbe Registry (WWKR). Pediatric Neurology, 45, 141-148.
  • Pelham, W.E., Waschbusch, D.A., Hoza, B., Greiner, A.R., Gnagy, E.M., Sams, S.E., Vallano, G., Majumdar, A., Carter, R.L. (2011). Music and Video as Distractors for ADHD Boys in the Classroom: Comparison with Controls, Individual Differences, and Medication Effects. Journal of Abnormal Child Psychology, 39, 1085–1098.
  • Tan, W., Stehman, F.B., and Carter, R.L. (2009). Mortality Rates Due to Gynecologic Cancers in New York State by Demographic Factors and Proximity to a Gynecologic Oncology Group Member Treatment Center: 1979-2001. Gynecologic Oncology, 114, 346-352.
  • Duffner, P.K., Jalal, K., and Carter, R.L. (2009). The Hunter’s Hope Krabbe family database. Pediatric Neurology, 40, 13-18.
  • Raja, S., Ma, C., & Yadav, P. (2008). Beyond food deserts measuring and mapping racial disparities in neighborhood food environments. Journal of Planning Education and Research27(4), 469-482.
  • Leon, A. E. C., Michienzi, K., Ma, C. X., & Hutchison, A. A. (2007). Serum caffeine concentrations in preterm neonates. American journal of perinatology24(01), 039-047.