Project Participants

Members of the Research Team (in alphabetic order)

Andrea Bradley-Ewing, MPA, MA
Emily Farrow, PhD
Mary Anne Hammond, BS
Mark Hoffman, PhD
Angie Knackstedt, BSN, RN-BC
John Lantos, MD
James McClay, MD, MS
Angie Myers, MD, MPH
Ayten Shah, BSN
Kim Smolderen, PhD
Zohreh Talebizadeh, PhD

Members of the Community Advisory Board-CAB (in alphabetic order)

Seth Bittker, BS

Stakeholder Category: Parent Representative

Short Biography: Seth graduated from the California Institute of Technology with Bachelor of Science in Mathematics. His primary professional background is in Software Management. He has been actively involved in parents’ advocacy groups and recently published an article based on his personal observations of his son’s condition (autism spectrum) and other struggling parents’ experiences. Seth also presented at the International Meeting for Autism Research in Utah on May 2015. He is eager to learn about potential genetic risk factors contributing to his son’s condition, which stimulated Seth to gain personal experience in using existing technology for SNP data analysis. He obtained his own and his family’s DNA readings through a genetic service company-23andMe. He is interested in using genetic data to find treatments or diet options that may help improve his child’s symptoms.

Role in the Project:  Seth contributes patient/parent perspectives to the Project, as well as his personal experience in using direct-to-customers genetic services.

Email: sbittker@yahoo.com

Jeff Blackwood, MS
Stakeholder Category: Industry Representative

Short Biography: Jeff is the Kansas State Representative for Autism Society as well as the Vice President of the Board for Autism Society of the Heartland. He is the co-founder, CEO and President of ABPathfinder, developer of a cloud-based software tool to improve the efficiency and effectiveness of autism therapy, which has been named a recipient of Microsoft’s 2015 Health Innovation Awards for enhancing the quality of patient care through analytics. ABPathfinder is based in Overland Park, Kansas; its mission is to help children with ASD live more social lives. With the consultation of ABA and behavioral disorders specialists, the company developed Therapy Support Software and technology tools to aid autism, PDD, Asperger’s and speech therapy, which enables educators and therapists improve a child’s skill acquisition rate by up to 20% while cutting administrative time in half. Currently, ABPathfinder is offered in therapy centers and school districts across the country, and Jeff’s team is in discussions with international therapy organizations.

Role in the Project: Jeff represents industry point of view in this Project.
Website: http://pathfinderhi.com/
Email: jblackwood@abpathfinder.com

Jamie Bolen, RN, BSN

Stakeholder Category: Parent Representative

Short Biography: Jamie is the mother of a congenital heart defect survivor. Her son was diagnosed in utero with Hypoplastic Left Heart Syndrome. He has had multiple open-heart surgeries many complications postoperatively requiring additional hospital stays, medications and further invasive procedures. She currently works as a Registered Nurse at Children’s Mercy Hospital (CMH). She was a part of the Family Advisory Board at CMH as a parent coordinator from 2008 - 2010. From 2007 to present, she has served as the Public Relations Coordinator for the Congenital Heart Defect Families Association, a support group for families of children born with heart disease. Additionally, she is on the Board of Directors for Camp Systole, a medically supervised camp for children with heart disease. She has also served as a volunteer and an advocate for the American Heart Association since 2005.

Role in the Project: Jamie shares her experience as a parent/caregiver, as well as her nursing profession perspective. She also assists with the dissemination of the results in patient advocacy groups.

Email: jlbolen@cmh.edu

Amy Brower, PhD

Stakeholder Category: Scientist

Short Biography: Amy works on several projects at the American College of Medical Genetics including serving as Project Manager on the National Coordinating Center’s Long Term Follow-Up Project and as a Genomic Scientist for the Newborn Screening Translational Research Network. She has a background in medical genetics, genomics and bioinformatics, and used to be a member of the Human Genome Project team. Amy is a former member of the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children and a consultant to the Follow-up and Treatment Subcommittee and a member of the Health Information Technology Workgroup.

Role in the Project: Amy provides consultations as a geneticist and facilitates dissemination of the Project results.

Website: http://www.nbstrn.org/about/contactus
Email: abrower@acmg.net

Mark Bryant, JD
Stakeholder Category: Patient Representative

Short Biography: Mark is recognized as one of the best land use and public law attorneys in the Kansas City metropolitan area. He is a former member of the Kansas City Council, Tax Increment Financing Commission, and Land Clearance for Redevelopment Authority and Economic Development Corporation, who helped reshape our city and its future. He has served on the executive committee of the Kansas City Zoo and Former President and Board member of the Negro Leagues Baseball Museum. He is Of Counsel at White Goss Bowers March Schulte & Weisenfels. Mark has been diagnosed with peripheral arterial disease (PAD) fifteen years ago and underwent several interventions for his symptoms. He is involved with Dr. Smolderen’s PCORI project (PORTRAIT) and has had a great experience serving as a patient representative on her focus group.

Role in the Project: Mark brings patients’ perspective to the Project, as well as experience working on PCORI studies. He also assists with dissemination of this study among other stakeholders and organizations.

Website: http://whitegoss.com/attorney/mark-bryant/
Email: mbryant@whitegoss.com

Sheryl Chadwick, BS

Stakeholder Category: Parent Representative

Short Biography: Sheryl is the mother of a childhood cancer survivor. Her son was diagnosed with Acute Lymphoblastic Leukemia at the age of six. Throughout his treatment, he suffered from multiple side effects from having a suppressed immune system. Sheryl is a Family Centered Care Coordinator at Children’s Mercy Hospital (CMH) since 2008. She joined the Family Advisory Board at CMH as a charter member in 2003, and served as Chairperson of the Board in 2005. Furthermore, her background as a Financial Analyst with IBM compliments her role as a parent on staff by allowing her to critically review outcomes and data from patient- and family-centered care initiatives.

Role in the Project: Sheryl brings a parent/caregiver perspective to the Project.
Email: sachadwick@cmh.edu

Broderick Crawford, BS

Stakeholder Category: Patient Advocate, Community Engagement

Short Biography: Broderick Crawford is a community volunteer, dedicated to assisting and improving the lives of those who are less fortunate. Broderick has over 25 years of experience in the health care industry. Broderick currently serves as the Community Health Director of the NBC Community Development Corporation in Kansas City, Kansas. This includes roles as Supervisor, Ancillary Services for Saint Luke’s Internal Medicine and Clinic Supervisor for KU Infectious Diseases as well, as the Clinic Supervisor of The Heart Clinic. Broderick has been a member of the New Bethel Church since 1974 serving as a member of the Board of Directors, Men’s Ministry, and Health & Wellness Ministry. Broderick serves on numerous community organizations including: President of the Missouri Prostate Cancer Coalition, Mid America Regional Council Community Health Worker Advisory Committee, Latino Health for All, and 8th St. YMCA and Better Together Board of Directors.

Role in the Project: Broderick brings the patient and community perspectives to the Project. He also facilitates dissemination of the Project results among African-American community.

Website: http://kcur.org/post/kc-checkup-four-questions-broderick-crawford#stream/0
Email: broderick.crawford@nbccdc.org

Laura Fitzmaurice, MD, FAAP, FACEP

Stakeholder Category: Physician

Short Biography: Laura has over 25 years of experience working in healthcare. She is Professor of Pediatrics and serves as a Pediatric Emergency Medicine Physician, the Chief Medical Information Officer, and the Associate Executive Medical Director for Children’s Mercy Hospital. She has been involved nationally in Health Information Technology as a member of the National Association of Children’s Hospitals and Related Institutions advisory committee on meaningful use, as well as regionally as a member of Lewis and Clark Information Exchange’s Board of Directors. Laura is board certified in Pediatrics and Pediatric Emergency Medicine.

Role in the Project: Laura brings physicians’ perspective for the Project and facilitates the dissemination of the Project results.

Email: lfitzmaurice@cmh.edu

Valerie Hu, PhD

Stakeholder Category: Scientist, Parent Representative

Short Biography: Valerie is a Professor of Biochemistry and Molecular Medicine at The George Washington University School of Medicine & Health Sciences, and the Chair of the Autism and Neurodevelopmental Disorders Initiative Faculty Committee. A mother of a son with autism spectrum disorders (ASD), Valerie redirected her research focus towards autism in 2005 and has since published several papers on the genes and biological pathways associated with ASD. The long term goal of her research is on personalized diagnosis and treatment of ASD, which she aims to achieve by developing a better understanding of the underlying biology giving rise to different manifestations of autism through the identification of altered genes, pathways, and gene regulatory mechanisms specific to the different subtypes of ASD. Valerie received her Ph.D. in Chemistry from California Institute of Technology and did her postdoctoral research in Membrane Biochemistry and Immunology at UCLA.

Role in the Project: Valerie shares her professional expertise as a scientist working on genetics of neurodevelopmental disorders, as well as parent perspectives.

Website: http://andinitiative.gwu.edu/valerie-hu
Email: valhu@gwu.edu

Monirul Islam, MD

Stakeholder Category: Physician, PCORI Awardee

Short Biography: Monirul is an Associate Professor of Epidemiology at the University of Nebraska Medical Center. His research expertise is in infectious diseases and patient-centered outcomes in cancers. He has peer-reviewed and been invited to collaborate on publications and presentations that have impacted clinical practice and the development, refinement, and implementation of policies, procedures, and best practice guidelines in the fields of epidemiology, clinical health care, and PCOR. He is on the Editorial Boards of the Journal of Immigrant and Minority Health and the Journal of International Cancer Education. He is the PI of a PCORI project with focus on cancer.

Role in the Project: Monirul contributes his expertise with cancer patient outcomes research, as well as experience in working with PCORI.

Website: www.unmc.edu/publichealth/departments/epidemiology/facultyandstaff/monirul-islam.html
Email: kmislam@unmc.edu

Mary Kinart, BS
Stakeholder Category: Parent Representative

Short Biography: Mary is the mother of 2 adopted sons. The oldest son (currently 26 years old) was diagnosed with ADHD, Bipolar Disorder, Anxiety, Aspergers, Asthma, Allergies, Disgraphia, and Hidradenitis Suppurativa, and he is on numerous medications. Mary is his advocate for health care and daily needs. She and her husband are his guardians. Mary has attended numerous conferences on Autism and participated in Autism support groups. Her son is currently receiving services at Vocational Rehabilitation, Rehab Institute, and Diversity Placement Services. Mary joined Children’s Mercy Hospital (CMH) Family Advisory Board as a charter member. She has been employed at CMH since 2008. For the last five years she has worked in the Physician Recruitment department as the Physician Recruiter.

Role in the Project: Mary brings parent and caregiver perspective to the Project.
Email: mlkinart@cmh.edu

Paul Law, MD

Stakeholder Category: Physician, Parent Representative

Short Biography: Paul earned his medical degree from Johns Hopkins University (JHU) in 1997, and received a master's of public health degree from the JHU School of Public Health in 1996. He has extensive experience in the design and implementation of health research studies in autism and international health. In 1996, he began a collaborative project with the Cure Autism Now Foundation to develop the Internet System for Assessing Autistic Children (ISAAC), currently used by projects at the CDC, NIH, and both domestic and international academic institutions. He was the Clinical Database director of the Autism Genetics Resource Exchange project and the director of the Simons Simplex Collection @ Interactive Autism Network project. Paul joined Kennedy Krieger in 2005 to lead a project to develop the Interactive Autism Network, a national autism database and to support other researchers at the institute through the discipline of health research informatics. As a consultant to the World Health Organization, he is working on an initiative to develop an international online community of child health researchers in developing countries. He is a member of the American Academy of Pediatrics, the American Medical Informatics Association and Delta Omega, the Honorary Society in Public Health.

Role in the Project: In addition to his expertise as a physician, Paul serves as a Parent Representative. He shares his experience with building large health research studies.

Email: pl@sankuru.com

Matthew Mclaughlin, MD, MSB

Stakeholder Category: Physician

Short Biography: Matthew earned his medical degree from UMKC in 2009. He is interested in a career in research in clinical pharmacology and is receiving formalized training in a clinical pharmacology fellowship. Matthew has Advanced Masters degree in Bioinformatics. He is a manuscript reviewer for 3 separate journals and abstract review committee for the American Academy of Physical Medicine and Rehabilitation, the primary medical society for the specialty of physical medicine and rehabilitation. Matthew also participates in the Rehabilitation Medicine Scientist Training Program.


Role in the Project: Matthew shares physician/health care provider perspectives on the project development and implementation.

Email: mjmclaughlin@cmh.edu

DeeJo Miller, BS

Stakeholder Category: Parent Representative

Short Biography: DeeJo is a Family Centered Care Coordinator at Children’s Mercy Hospital (CMH). She is the mother of a child who was diagnosed with cancer when she was 13 years old. DeeJo has been an advocate for the American Cancer Society and the Leukemia and Lymphoma Society for many years. She has been on staff, representing the voice of parents, at CMH since 2008.

 


Role in the Project: DeeJo brings parent and a caregiver perspective to the Project. She assists with coordinating any family focus groups that may need to be convened and the dissemination of the results.

Email: dkmiller@cmh.edu


Ginger Nicol, MD

Stakeholder Category: Physician

Short Biography: Ginger is an Assistant Professor of Psychiatry and co-Director, Outpatient Child and Adolescent Psychiatry Clinic at the Washington University School of Medicine in St. Louis. Her research experience is on evaluating metabolic outcomes in antipsychotic-treated youth and adults, identification and prevention of cardiometabolic risk, as well as testing interventions to reverse weight gain and adverse metabolic outcomes in mentally ill population.

 


Role in the Project: Ginger provides expertise as a physician.
Website: http://wuphysicians.wustl.edu/for-patients/find-a-physician/ginger-e-nicol
Email: nicolg@psychiatry.wustl.edu


Kelly Ranallo, BS

Stakeholder Category: Local Community Leader, Patient Representative

Short Biography: Kelly is the Founder and President of the Turner Syndrome Global Alliance (TSGA). She has a teenage daughter who was diagnosed with Turner syndrome in 2008 and was immediately discouraged by the lack of answers and resources available in her community. She joined the Kansas City Chapter of the Turner Syndrome Society and served as President from 2009-2013. Kelly also joined the (board) at Children’s Mercy Hospital and set about building a Turner Syndrome Clinic from within the hospital. The Great HeighTS Clinic opened in 2010 and has since become a national model for providing comprehensive services –including support and education–to girls and families living with TS. Kelly’s passion is to learn more about TS through research to ensure that girls and women with TS have the information, tools, and support they need to live to their fullest potential.

Role in the Project: Kelly contributes to the Project her community leadership experience and represents patient perspectives.

Website: http://tsgalliance.org/about-us/
Email: kranallo@tsgalliance.org


Leon Rozenblit, PhD, JD

Stakeholder Category: Industry Representative

Short Biography: Leon has strong background in statistics and research methods. He has taught graduate and undergraduate statistics courses at Yale, and served as a statistical consultant on a variety of projects. Leon has worked for the last 15 years delivering informatics solutions to interdisciplinary research projects with a strong focus on mental health and autism. His work grew from building systems that supported small collaborations to some of the largest and most ambitious projects in the domain, like the Simons Simplex Collection. Leon is President/CEO at Prometheus Research founded in 1999. Today, Prometheus is an organization with over 35 employees that specializes in using information technology to help researchers make better use of their data. The company’s primary mission is to accelerate the quest for knowledge by designing adaptable informatics systems that promote dynamic scientific collaborations and by delivering effective data management services with those systems. The Prometheus team has successfully completed over 40 consulting engagements, extending its user community to over 20 leading research institutions across North America.

Role in the Project: Leon represents industry point of view in this Project.
Website: www.linkedin.com/in/leonrozenblit
Email: leon@prometheusresearch.com


John Spertus, MD, MPH, FACC

Stakeholder Category: Physician, PCORI Awardee

Short Biography: John is a cardiologist and the Lauer/Missouri Endowed Chair and Professor of Medicine at the University of Missouri-Kansas City, where he serves as Clinical Director of Outcomes Research at Saint Luke's Mid America Heart Institute. He has served on numerous national committees for the American College of Cardiology, American Heart Association, American Medical Association, National Quality Forum, Medicare and United Healthcare. John’s research activities led to his induction into the American Society of Clinical Investigation in 2006, his receipt of the AHA Quality of Care and Outcomes Research Council's Distinguished Achievement Award, being named by Thompson Reuters as one of the most influential scientists in the world in 2014 and being awarded the AHA QCOR Lifetime Achievement Award in 2015. He has extended his translational research to illuminate the prognostic significance of genetic and other biomarkers on cardiovascular outcomes. He founded the Cardiovascular Outcomes Research Consortium and CV Outcomes, a nonprofit corporation dedicated to advancing healthcare quality and outcomes research in cardiovascular disease and Health Outcomes Sciences, a biotechnology start-up to support the implementation of evidence-based, personalized medicine throughout the country.

Role in the Project: In addition to his outcomes research expertise and experience working with PCORI, John also assists with the dissemination of the Project results.

Website: http://med.umkc.edu/directories/som-faculty/name/john-spertus/
Email: spertusj@umkc.edu


Olivia Veatch, PhD

Stakeholder Category: Scientist

Short Biography: Olivia is a Neurogeneticist and Research Instructor in Neurology at Vanderbilt University. Her areas of research and expertise are working with electronic medical record-based systems and in particular the Vanderbilt databases, BioVU and the Synthetic Derivative. Olivia has been actively involved with multiple National and International genome and phenome consortiums, such as Electronic Medical Records and Genomics (eMERGE) Network.


Role in the Project: Olivia provides consultations with respect to her experience working with data available in the eMERGE Network. She also assists with the dissemination of the results of the study among research communities and consortiums.

Website: http://medschool.vanderbilt.edu/vgi/person/olivia-veatch-phd
Email: olivia.j.veatch@vanderbilt.edu


Darcy Weidemann MD, MHS

Stakeholder Category: Physician

Short Biography: Darcy completed her medical degree training, pediatric residency, and pediatric nephrology fellowship at Johns Hopkins Children’s Center in Baltimore, Maryland. She also completed a Masters in Health Science with a concentration in Clinical Epidemiology at the Johns Hopkins Bloomberg School of Public Health in 2014. She is currently a pediatric nephrologist at Children’s Mercy Hospital and Assistant Professor of Pediatrics at the University of Missouri-Kansas City. Her research interests are in preventing or ameliorating the complications associated with chronic kidney disease (CKD) and its progression in children, as well as the use of large healthcare databases for research purposes. Current projects include studies of how arsenic levels affect chronic kidney disease progression in children with CKD, as well as examination of novel biomarkers to predict CKD progression.

Role in the Project: Darcy provides expertise as a physician experienced with patient outcomes research.

Email: dkweidemann@cmh.edu


Kristen Worden, MS

Stakeholder Category: Patient Representative

Short Biography: Kristen is a triple negative breast cancer survivor and BRCA1 genetic mutation holder. She had the wonderful opportunity to have her cancer journey highlighted in an article in Marie Claire magazine and participated in a Q&A on a local radio station and local news show on TV about her experiences. She has worked in the pharamaceutical research industry for over 15 years. She works with multiple pharmaceutical companies to review study protocols, set up clinical databases to house the study data, review data for accuracy, and prep the data for FDA submission. Kristen served in a leadership role for the Young Survival Coalition (YSC) for 3 years and organized their largest fundraiser in Living Pink Gala. She has also been an active volunteer with the Susan G. Komen Organization.

Role in the Project: Kristen brings the patient perspective to the Project.
Email: wordenkristen@gmail.com