Research Team

Our research team comprises of 11 members and includes two patient representatives. The role and specific tasks of each research team member are briefly outlined in here.

Research Team Members (in alphabetic order)

Andrea Bradley-Ewing, MPA, MA (co-investigator)

Stakeholder Category: Community Engagement Coordinator, PCORI Awardee

Short Biography: Andrea is the Director of Community Engaged Research at Children’s Mercy Hospital. She has over ten years experience directing research studies that have engaged patients, providers, local health departments, health service organizations, and faith and community organizations in research to improve health outcomes and reduce health disparities in vulnerable populations. Andrea has guided the development of several community advisory boards and has facilitated numerous focus groups on health promotion, HIV, diabetes, stroke and heart disease prevention. She is a co-investigator on Dr. Myers’s PCORI project and the site engagement coordinator on the GPC project, a PCORI funded multi-center project.

Role in the Project: Andrea contributes her experiences with outcomes research, community engagement as well as her familiarity with PCORI to the Project.

Email: abradleyewing@cmh.edu


Emily Farrow, PhD (consultant)

Stakeholder Category: Scientist

Short Biography: Emily is a board certified genetic counselor in addition to having a PhD in molecular genetics. As such, she has had training and experience in the ethical considerations of genetic testing. Part of her research as a post-doctoral fellow at Indiana University involved the genetic analysis of Mendelian disorders of metabolic bone disease. Emily is now Director of Laboratory Operations in the Center for Pediatric Genomic Medicine (CPGM) and has expanded her research skills to incorporate the application of whole exome, whole genome, transcriptome, and rapid whole genome sequencing to the diagnosis of genetic disorders in children. Under her direction, the CPGM has sequenced over 3000 samples for both research and clinical testing. She is also committed to genomic education and is the co-director of a Genomics Master Class which provides a one week immersive experience in genomics for all levels of investigators.

Role in the Project: In addition to her genetics research expertise, Emily gives overview of genetic data collected by the Center for Pediatric Genomic Medicine.

Email: egfarrow@cmh.edu


Mary Anne Hammond, BS (co-investigator)

Stakeholder Category: Parent Representative

Short Biography: Mary Anne is the parent and guardian of a 21 year old daughter who has GI issues, a heart defect, profound intellectual disability as well as severe autism – so she clearly understands the demands of having a child on the Autism Spectrum Disorders (ASD). She is the Education Coordinator for Autism and Related Disorders for Children’s Mercy Hospital (CMH). Her primary professional background is in sales, training and development. Her current job with CMH is to write/find/coordinate training programs for professionals, families and community partners about numerous and varied topics related to ASD. She has a particular interest in what is of value to families as they deal with the reality of this difficult disorder.

Role in the Project: In addition to representing parents/caregivers, Mary facilitates dissemination of the Project results among patient advocacy groups.

Email: mhammond@cmh.edu


Mark Hoffman, PhD (consultant)

Stakeholder Category: Scientist

Short Biography: Mark is a nationally recognized expert on the integration of genetic information with electronic health records, and in the development of technologies to enable clinical research. He led initiatives in genomics, personalized medicine, public health and clinical research. He is an active contributor in the scientific community and participated in NIH task forces, workshops and panels. Mark is Director of the Center for Health Insights at the University of Missouri-Kansas City and holds an academic appointment as an Associate Professor in the Department of Biomedical and Health Informatics and the Department of Pediatrics. He is Director of Translational Bioinformatics at Children’s Mercy Hospital.

Role in the Project: Mark provides his expertise on personalized medicine, electronic medical records, and patient health care.

Website: med.umkc.edu/directories/som-faculty/name/mark-hoffman/
Email: hoffmanma@umkc.edu


Angie Knackstedt, BSN, RN-BC (co-investigator)

Stakeholder Category: Patient Representative, Health Literacy Consultant

Short Biography: Angie is a cancer survivor. She is the Director of Health Literacy & Bioethics Clinical Coordinator at Children’s Mercy Hospital (CMH). She oversees health literacy initiatives at CMH and collaborates with health care professionals across the organization to promote a health literate environment. Angie co-directs the Children’s Mercy Certificate Program in Pediatric Bioethics, she is a member of the hospital Ethics Committee and coordinates and supports the nursing ethics efforts at CMH. She also coordinates and supports continuing education programs and conferences for nurses, physicians and health care professionals (for CMH and within the community and region). Angie participates in patient and family education processes, including development and maintenance of patient/family education materials and related policies and procedures. In 2014, she received the Health Literacy Missouri Trailblazer Award. This award is given to a person or organization doing important health literacy work in the state of Missouri.

Role in the Project: In addition to her role as a patient representative, Angie will also serve as the project health literacy consultant to help non-technical participants understand technical concepts discussed.

Email: aknacksted@cmh.edu


John Lantos, MD (consultant)

Stakeholder Category: Physician, Bioethics Expert

Short Biography: John is a pediatrician and nationally recognized bioethicist. He is the Director of Bioethics at Children’s Mercy Hospital (CMH). After 20 years on the faculty of The University of Chicago’s Pritzker School of Medicine, he moved to Kansas City to create and direct a pediatric bioethics center at CMH. His research focuses on the ethics of clinical trials, and he has analyzed the ethical issues in neonatology, cancer chemotherapy, renal dialysis, cardiac assist devices, and primary care pediatrics. His research has been funded by National Institutes of Health, The Robert Wood Johnson Foundation, and The John Templeton Foundation. He is an advisor to the American Academy of Pediatrics on bioethics issues and a past president of the American Society of Bioethics and Humanities, and he directs the Ethics Program for the Heartland Clinical and Translational Science Program. He has published more than 200 peer-reviewed papers and written or edited five books on bioethics. Currently, John serves on the PCORI Advisory Panel on Clinical Trials.

Role in the Project: John brings a physician perspective, as well as sheds light on Bioethical issues related to this Project.

Email: jlantos@cmh.edu


James McClay, MD, MS (consultant)

Stakeholder Category: Scientist, PCORI Awardee

Short Biography: James is an Associate Professor, Emergency Medicine and Informatics and Chair, Biomedical Informatics Graduate Program, at University of Nebraska Medical Center (UNMC). He has been active in health informatics since an NLM fellowship 20 years ago. He is currently the enterprise physician informaticist for UNMC and established the University of Nebraska Biomedical Informatics Graduate Degree program. In this capacity he is a Certified Epic Builder working with clinicians to collect standardized health care data during their daily work. His team at UNMC is working closely with PCORI to enhance the standardization of data throughout PCORI funded outcomes research. He is the UNMC site principle investigator for the Greater Plains Collaborative PCORI Clinical Data Research Network (GPC). He is one of the leaders of the GPC’s 10 academic medical centers efforts to incorporate findings from their biobanks into the comparative effectiveness research data analysis systems.

Role in the Project: In addition to his experience as a PCORI investigator, James provides his expertise on PCORnet CPG resources and facilitates dissemination of the Project results.

Website: www.unmc.edu/emergency/faculty/mcclay.html
Email: jmcclay@unmc.edu


Angie Myers, MD, MPH (co-investigator)

Stakeholder Category: Physician, PCORI Awardee

Short Bio: Angie is a pediatric Infectious Diseases physician at Children’s Mercy Hospital. She has eight years of pediatric infectious diseases experience post fellowship training and has participated in Quality Improvement initiatives, including efforts to increase patient access to subspecialty clinics and projects to increase annual influenza immunization in the diabetic and hematologic/oncologic populations. She has also conducted research examining healthcare workers knowledge, attitudes, and beliefs regarding influenza vaccine, influenza vaccine mandates, and routine child immunizations. She is a recipient of a PCORI award to engage communities in infectious disease research.

Role in the Project: Angie contributes to the Project her expertise in infectious diseases, public health, as well as her experience in working with PCORI.

Email: amyers@cmh.edu


Ayten Shah, BSN (project coordinator)

Stakeholder Category: Project Coordinator

Short Biography: Ayten is a Research Assistant in Autism Genetics Research Lab at Children’s Mercy Hospital (CMH). Her primary professional background is in Nursing, with five years of experience as a nurse in an outpatient pediatric clinic. She has been involved with the development of this Engagement project from its conception.

 


Role in the Project: Ayten assists with the participants’ communications, project surveys development, administrative tasks and record keeping, scheduling, follow-up and feedback collections.

Email: agadashova@cmh.edu


Kim Smolderen, PhD (consultant)

Stakeholder Category: Scientist, PCORI Awardee

Short Biography: Kim is a leader in the field of outcomes research in peripheral arterial disease (PAD), and in depression and cardiovascular disease research, and is currently the PI of 2 PCORI research projects. She has led multiple patient focus groups to collect the critical input needed for her PAD study, and is chairing the patient and physician expert panels for this PAD. Kim holds an academic appointment as an Assistant Professor at the Tilburg University, Belgium. In addition, she holds an adjunct appointment at the Saint Luke’s Mid America Heart Institute, Kansas City.

Role in the Project: Kim provides her expertise as a PCORI investigator for our Project. She also assists with qualitative analysis of the collected feedback.

Website: www.tilburguniversity.edu/webwijs/show/k.g.e.smolderen.htm
Email: Kim.Smolderen@UGent.be


Zohreh Talebizadeh, PhD (PI)
Stakeholder Category: Scientist

Short Biography: Zohreh holds an academic appointment as an Associate Professor of Pediatrics at the UMKC and is a research scientist at Children’s Mercy Hospital. Zohreh is an established investigator with more than 15 years of experience in studying genetics of autism and complex neurodevelopmental disorders. Her research focuses on addressing heterogeneity in complex conditions and subtype identifications. She has served as a PI for several collaborative projects funded by autism foundations (Cure Autism Now and Autism Speaks) and recently the Department of Defense. She has a strong publication and funding track record for collaborative work with investigators from other institutions, including Valerie Hu, PhD, and Olivia Veatch, PhD, who serve as experts on the CAB.

Role in the Project: Zohreh is the PI of the Project; she provides the overall direction and coordination of this Engagement Project. She also contributes her expertise in genetics research.

Website: zohreh-talebizadeh.net
Email: ztalebi@cmh.edu