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KIDDRC News Spring-Summer 2014

Frontiers resources extended to KU-Lawrence investigators

Frontiers, the Heartland Institute for Clinical and Translational Research supports investigators doing translational work at KUMC, along with those at other universities, hospitals and clinics in the Kansas City region. It is part of the Clinical and Translational Science Awards (CTSA) consortium, a national group of medical research institutions funded by NIH

The Frontiers Research Participant Registry represents some 26,000 KUMC patients who are interested in being contacted regarding future research studies. This registry was formerly only open to KUMC investigators, but on September 11, KIDDRC leadership and the Frontier administration agreed on expanding access to KU-Lawrence investigators. This will be accomplished by assigning investigators external to KUMC to KUMC sponsor investigators. For more information, contact John Colombo.

The smaller Pioneer Recruitment Registry is a resource that allows members of the public to become involved in medical research at several different participating institutions. The Pioneers registry collects basic medical history from its volunteers and, when possible, also connects electronic medical records to participants so that researchers can target participants. This resource is open to all University of Kansas campus researchers as well as those from other institutions across the region and supports data sharing among regional research projects.

KIDDRC Co-Director Peter Smith directs the Pilot and Collaborative Studies Funding Program that provides investigators with awards of up to $30,000 to support the development of clinical or translational pilot/feasibility studies and novel methods development that will ultimately lead to the submission of peer-reviewed grants.

Trail Blazer Awards are small awards up to $5000 to assist in paying for services or equipment in support of clinical and translational research involving human subjects or human tissue for projects to be submitted or currently funded. 

Both of these funding programs are available to all KIDDRC investigators.

Frontiers is focused on speeding up the time taking a discovery from the lab to the bedside by connecting researchers to a network of colleagues and resources distributed among 12 components Take a look at the many other innovative services and resources of this growing endeavor.

KIDDRC research behind new KCMO initiative

Professor Judith Carta reading to preschool calssOne of the key discoveries of the scientists who have been affiliated with the KIDDRC in the last 45 years was that of the “30 million word gap” by Todd Risley and Betty Hart reported in Meaningful Differences. They found that by age three, children of the least affluent households were exposed to 30 million fewer words than children of educated parents and higher-income homes. Dale Walker, Charles Greenwood, Judy Carta and others showed that this deficit in early language acquisition predicted later school performance and literacy. They then developed practices for parents and early childcare teachers to follow to encourage vocabulary acquisition by talking, reading and playing with children.

The Risley/Hart discovery has not only propelled science, but also public policy.  A recent notable example is the “Providence Talks” project of the city of Providence, Rhode Island. The city received a $5 million grand prize in the Bloomberg Philanthropies’ Mayors Challenge for the project that will equip low-income children with the LENA® system (inspired by the Hart/Risley discovery) to record how many words they hear and then coach parents on encouraging language development.

Now, Kansas City has fittingly launched its own community-wide initiative with the Talk, Read, and Play with Your Child Everyday campaign, which was conceived by the Family Conservancy and Juniper Gardens Children’s Project researchers led by Dale Walker in 2013.

On August 24, Mayor Sly James and Turn the Page KC hosted a community conversation to advance the campaign and elicit commitments from organizations to take the message of the importance of early, intentional language development to parents and others they serve. Kansas City was chosen as one of 14 cities by the Department of Education and the National League of Cities to host a community conversation on ways to improve early childhood education. Dr. Libby Doggett, Deputy Assistant Secretary for Policy and Early Learning at the U.S. Department of Education, delivered the keynote.

KIDDRC investigator Judy Carta presented the research behind the initiative at the event and said that she has never before seen such a national groundswell of support and action for the ideas developed at KU on early learning.

“The Community Conversation around Talk Read Play was for me both thrilling and educational. It was thrilling to see how the ideas around the importance of parents’ interacting with their children were finally reaching a mass audience—a level of impact needed to move the needle of how parents talk with their babies, she said. “It was educational for me as a researcher to understand the powerful potential of a mayor’s office in reaching large numbers of people and programs to commit to spreading the Talk Read Play message. It’s incredibly exciting to see the impact of Betty Hart and Todd Risley’s seminal work on the national dialogue on how we can improve early learning.

KIDDRC Project Spotlight

Testing determinants of resilience: mental health, child maltreatment and adaptive behavior outcomes

How severely children are abused, rather than how frequently, appears to predict which children will suffer serious mental health outcomes, according to the first study from one of the most in-depth analyses of the mental health of foster children ever undertaken.

“If your goal is to understand what about a child’s life really speaks to his mental health or illness, so far the data is telling us that it would be how bad or injurious the abuse was — and it would only have to happen once,” said Yo Jackson, University of Kansas associate professor of clinical child psychology, who directs the SPARK (Studying Pathways to Adjustment and Resilience in Kids) Project.

In the study published in the journal Child Abuse and Neglect, the KU team examined the role of frequency, severity and type of abuse in predicting the behavioral outcomes of 309 children between the ages of 8 and 22 in the legal custody of the Division of Family Services in Jackson County, Missouri.

The assessment of maltreatment was based solely on self-reports from the children to determine the frequency and severity of four types of abuse: physical, sexual, psychological and neglect.

“All that really moved the needle on outcomes was severity. It is how hard you were hit, how invasive your molestation was, how injurious your neglect was,” Jackson said.

The children who experienced severe abuse were more likely to have problems with aggression and acting-out and to demonstrate less adaptive behavior.

While Jackson strongly cautioned that the study is not saying that children who experience frequent, but milder kinds of maltreatment should not be in foster care, it does suggest that kids who have been abused and in foster care are not all the same.

“There’s really a range of kids and that range is important for us to understand and think about how we are going to intervene," she said.  “You can’t treat something if you can’t name it and if you mislabel it.”

Do the study results generalize to the rest of us? Jackson says that they do.

“They generalize in the sense that these kids are in the general population. Your kids go to school and play soccer with them, and their numbers are growing.” 

The results could also have some implications for other kinds of trauma that all kids experience. “We hope the model of the relation between trauma experiences like child maltreatment and mental health could inform other models of how traumatic events in the general population operate to predict outcomes.”

Jackson said that future analyses will determine how childhood experiences of maltreatment and other stressors affect both adjustment and maladjustment in youth.

The ongoing five-year project is funded by the National Institute of Mental Health.

Jackson’s co-authors are Joy Gabrielli, KU doctoral student in clinical child psychology, Kandace Fleming, KU assistant scientist., P. Kalani Makanui, KU postdoctoral researcher, and  Angela M. Tunno, KU doctoral student in clinical child psychology.


Warren's VC service recognized with named award

In honor of Steven Warren’s seven years of service as Vice Chancellor for Research, the University announced that the University of Kansas Research Achievement Award, presented annually to an outstanding academic researcher, would henceforth be named the Steven F. Warren Research Achievement Award.

Further, at KU’s doctoral graduation hooding ceremony in May Warren also received an award from Dean of Graduate Studies Michael Roberts in recognition of his contributions to graduate education over the past 7 years.

Warren served as the director of the Life Span Institute and KIDDRC from 2001 to 2008.  Warren is presently a professor of Speech, Language, Hearing and LSI investigator.

William Brooks, Ph.D.Brooks receives School of Medicine mentoring award

William Brooks, professor of neurology and director of the Hoglund Brain Imaging Center received the University of Kansas Excellence in Mentoring Award at the School of Medicine’s faculty retreat on August 20, 2014. This award acknowledges the “commitments, effort and advice given to ensure that junior faculty achieve their full academic potential.”

Storkel selected as ASHA Fellow

Professor Holly Storkel, chair of the Department of Speech-Language-Hearing and co-director of the Intercampus Program in Communicative Disorders, has been named a fellow of the American Speech-Language-Hearing Association.

Fellowship is one of the highest honors the Association bestows. To be awarded Fellow, the nominee must have made outstanding contributions to the discipline of communication sciences and disorders.

Brady, Bourque best AAC research paper 2013

Nancy Brady, Kathy Bourque, R. Michael Barker and Sanae Akaba, are the authors of “Disabilities” published in Augmentative and Alternative Communication that was selected as the 2013 AAC Editors’ Best Research Paper.

Gustafson abstract selected one of best papers at international conference

Heart Rate Variability as a Proxy for Fetal Programming: The Effect of Maternal Exercise by Kathleen Gustafson, et al. was selected as one of the best papers at the 8th Conference of the European Study Group on Cardiovascular Oscillations (ESGCO). May 25-28, in Trento, Italy.

Butler paper one of most cited of pediatrics journals

A recent review in the journal Pediatrics (Official Journal of the American Academy of Pediatrics) identified and analyzed the top 100 most frequently cited articles of 497,240 published in 191 journals dedicated to pediatrics between 1945 and 2010. An article by Dr. Merlin G. Butler was cited as #53 on the list (Holm VA, Cassidy SB, Butler MG, Hanchett JM, Greenswag LR, Whitman BY, Greenberg F. Prader-Willi syndrome—consensus diagnostic-criteria. Pediatrics. 1993;91(2):398–402).

McCarson receives 2014 Distinguished Teaching Award

Chancellor Bernadette Gray-Little presented Kenneth McCarson, associate professor of pharmacology, toxicology and therapeutics, with a Distinguished Teaching Award at the KU Teaching Summit on August 21.  A neurobiologist, McCarson has participated widely in medical and graduate education in addition to taking on many leadership roles. A former chair of his department's graduate training program, he is presently the course director of Essentials in Pharmacology. McCarson is also the scientific co-director of the Biobehavioral Measurement Core of the KIDDRC.

Horn receives 2014 Graduate Educator Award

Eva Horn, professor of Special Education and Life Span Institute investigator was selected as one of two recipients for the 2014 Louis Byrd Graduate Educator Award at the May 17, 2014 doctoral hooding ceremony.

According to Dean of Graduate Studies, Michael Roberts, Horn was nominated by her colleagues and noted for her dedication to graduate students. Comments from nominators noted her academic, professional and personal support. Another said, “When I am confronted with an unfamiliar challenge, I literally think, ‘What would Eva do?,’ and if the answer isn’t forthcoming, I call or email her, and she continues to provide support and guidance.”


Merlin Butler

Butler, M.G. (guest editor). The Identification of the Genetic Components of Autism Spectrum Disorders (Special Issue “International Journal of Molecular Sciences”), MDPI AG, Basel, Switzerland 2014-2015.

Butler, M.G. (commentary). Hypotonia in infants with Prader-Willi syndrome. In: 2015 Year Book of Pediatrics, M. Cabana (ed.), Elsevier Publishers, San Francisco, CA.

Heymsfield, S.B., Avena, N.M., Baier, L., Brantley, P., Bray, G., Burnett, L.C., Butler, M.G., Driscoll, D.J., Elmquist, J.,  Forster, J.L., Goldstone, T., Gourash, L., Greenway, F., Leibel, R., Loos, R.J.F., Scheimann, A., Roth, C.L., Seeley, R.J., Sheffield, V., Tauber, M., Vaisse, C., Waterland, R., Wevrick, R., Yanovski, J.A. & Zinn, A. (2014). Hyperphagia-current concepts and future directions: Proceedings of the 2nd International Conference on Hyperphagia. Obesity 22 (Suppl 1):S1-S17.

Mettman, D.J., Penick, E.C., Poje, A.B., Butler, M.G. & Manzardo, A.M. (2014). A preliminary case study of androgen receptor gene polymorphism association with impulsivity in women with alcoholism.  Adv. Genomics Genet.4:5-13.

Schroeder, S. R., Marquis, J., Reese, R.M., Richman, D.M., Mayo-Ortega, L., Oyama-Ganiko, R.,LeBlanc, J., Brady, N., Butler, M.G., Peacock, G., Foster, J., Johnson, T. & Lawrence, L. (2014). Risk factors for self-injury, aggression, and stereotyped behavior among infants and toddlers at risk for intellectual and developmental disabilities. Am. J. Intell. Dev. Disabil. 119(4):351-370.

Roberts, J.L., Gandomi, S.K., Parra, M., Liu, I., Gau, C., Dasouki, M. & Butler, M.G. (2014). Clinical report of a 17q12 microdeletion with additionally unreported clinical features. Case Reports Genet. 2014:26494.

Usrey, K.M., Williams, C.A., Dasouki, M., Fairbrother, L.C. & Butler, M.G. (2014). Congenita arthrogryposis: An extension of the 15q11.2 BP1-BP2 microdeletion syndrome? Case Reports Genet. 2014:127258

Gold, J., Ruth, C., Lee, H-S., Butler, M.G., Driscoll, D., Dykens, E., Roof, E., McManus, B., Heinemann, J., Cassidy, S., & Kimonis, V. (2014). Frequency of births due to assisted reproductive technology (ART) In Prader-Willi syndrome. Genet. Med. 16(2):164-169.

Butler, M.G., Rafi, S.K. & Manzardo, A.M. (2014). Clinically relevant candidate and known genes for autism spectrum disorders with representation on high resolution chromosome ideograms. OA Autism 2(1):5

Manzardo, A.M., Gunewardena, S., Wang, K. & Butler, M.G. (2014). Exon microarray analysis of human dorsolateral prefrontal cortex in alcoholism. Alcohol. Clin. Exp. Res. 38(6):1594-1601.

Gold, J.A., Ruth, C., Osann, K., Flodman, P., McManus, B., Lee, H.S., Donkervoort, S., Khare, M., Roof, E., Miller, J.L., Driscoll, D.J., Butler, M.G., Heinemann, J., Cassidy, S. & Kimonis, V.E. (2014). Frequency of Prader-Willi syndrome in births conceived via assisted reproductive technology. An erratum. Genet. Med. 16(2):164-169.

Butler, M.G., Usrey, K.M., Roberts, J.L., Manzardo, A.M. & Schroeder, S.R. (2014). 20q13.2-q13.33 deletion syndrome: A clinical report. J. Ped. Genet., In press.

Jerkovich, A.M. & Butler, M.G. (2014).  Further evidence of phenotypic expansion of 15q11.2 BP1-BP2 microdeletion (Burnside-Butler) syndrome. J. Ped. Genet., in press.

Navneet Dhillon

Dalvi P, Wang K, Mermis J, Zeng R, Sanderson M, Johnson S, Dai Y, Sharma G, Ladner AO, Dhillon NK. HIV-1/cocaine induced oxidative stress disrupts tight junction protein-1 in human pulmonary microvascular endothelial cells: role of Ras/ERK1/2 pathway. PLoS One. 2014 Jan 7;9(1):e85246. doi: 10.1371/journal.pone.0085246. eCollection 2014.

Judith Gross

Francis, G.L., Gross, J.M.S., Turnbull, A.T., & Turnbull, H. R. (2014). The Family Employment Awareness Training (FEAT): A Mixed-method Follow-up. Journal of Vocational Rehabilitation, 39, 167-181. DOI:10.3233/JVR-130652

Francis, G.L., Gross, J.M.S., Turnbull, A.T., & Turnbull, H.R. (2014). Family perspectives of the Family Employment Awareness Training: An exploratory investigation. Career Development and Transition for Exceptional Individuals, published online 2 April 2014 at DOI: 10.1177/2165143414528241

Francis, G.L., Gross, J.M.S., Turnbull, A.T., & Turnbull, H.R. (2014). Understanding barriers to competitive employment: A family perspective. Inclusion, 2(1), 37-53. Published online at DOI: 10.1352/2326-6988-2.1.37

Kathleen Gustafson

May, L.E., Suminski, R. R., Berry, A., Langaker, M.D., Gustafson, K.M. (2014) Maternal physical activity mode and fetal heart outcome. Early Human Dev 2014. DOI: 10.1016/j.earlhumdev.2014.04.009.PMID:24794306

May, L.E., Scholtz, S.A., Suminski, R.R., Gustafson, K.M. (2014) Aerobic exercise during pregnancy influences infant heart rate variability at one month of age. Early Human Development. 90; 33-38. PMID: 24287100

Jackob Moskovitz 

Moskovitz J., Walss-Bass C, Cruz DA, Thompson PM, Bortolato M , Methionine sulfoxide reductase regulates brain catechol-O-methyl transferase activity, International Journal of Neuropsychopharmacology, 2014 Oct;17(10):1707-13. doi: 10.1017/S1461145714000467. Epub 2014 Apr 15.

Stephen Schroeder

Schroeder, S. R., Marquis, J., Reese, R.M., Richman, D.M., Mayo-Ortega, L., Oyama-Ganiko, R., LeBlanc, J., Brady, N., Butler, M.G., Peacock, G., Foster, J., Johnson, T. & Lawrence, L. (2014). Risk factors for self-injury, aggression, and stereotyped behavior among infants and toddlers at risk for intellectual and developmental disabilities. Am. J. Intell. Dev. Disabil. 119(4):351-370.

Holly Storkel

Vitevitch, M. S., Storkel, H. L., Francisco, A. C., Evans, K. J., & Goldstein, R. (In Press). The influence of known-word-frequency on the acquisition of new neighbors in adults. Language, Cognition, and Neuroscience. NIHMSID#583991; doi: 10.1080/23273798.2014.912342

Storkel, H. L., Bontempo, D. E., & Pak, N. S.,* (In Press). On-line learning from input versus off-line memory evolution in adult word learning: Effects of neighborhood density and phonologically-related practice. Journal of Speech, Language, and Hearing Research. NIHMSID#573694; doi:10.1044/2014_JSLHR-L-13-0150


Merlin Butler

Swanson-Fellows, H., Gold, J., Osann, K., Flodman, P., Clark, S., Roof, E., Dykens, E., Butler, M.G., Miller, J., Driscoll, D. & Kimonis, V. (2014).  Analysis of phenotype in a large cohort of patients with Prader-Willi syndrome: Differences between gender, molecular type and growth hormone use.  2014 American College of Medical Genetics and Genomics (ACMG) Annual Clinical Genetics Meeting, March 25-29, Nashville, Tennessee.

Irizarry, K., Bain, J., Butler, M.G., Ilkayeva, O., Newgard, C., Muehlbauer, M., Broadhurst, D., Haqq, A. &      Freemark, M.  (2014). Metabolic correlates of hyperphagia and insulin sensitivity in Prader-Willi syndrome and non-syndromic obesity. Pediatric Academic Societies (PAS) and Asian Society for Pediatric Research (ASPR) Joint Meeting, May 3-6, Vancouver, British Columbia, Canada

Aedma, K., Butler, M.G., Poje, A.B., Penick, E.C., & Manzardo, A.M. (2014). Influence of CAG repeat polymorphism of the androgen receptor (AR) gene on impulsive phenotype and psychiatric symptomology in alcohol dependent men. American Psychiatric Association, May 18-22, San Francisco, California.

Negi, R., Butler, M.G., Poje, A.B., Penick, E.C. & Manzardo, A.M. (2014). Relationship between cytokine levels and psychiatric measures in men with alcoholism. American Psychiatric Association, May 18-22, San Francisco, California.

Pendleton, T., Poje, A.B., Penick, E.C., Butler, M.G. & Manzardo, A.M. (2014). Alcoholism severity influences psychiatric symptomatology and treatment response to benfotiamine in males. American Psychiatric Association, May 18-22, San Francisco, California.

Judith Gross

Judith Gross PhD and Grace Francis PhD, Assistant Research Professors at the Beach Center on Disability, presented an invited, half-day seminar on our research and training NIDRR-FI funded project, Assessing Family Employment Awareness Training (FEAT) June 29, 2014 at the annual APSE (the Association of People Supporting Employment first) conference in Long Beach, CA.

Kathleen Gustafson

Liao, K., McCandliss, B., Carlson, S.E., Colombo, J. Shaddy, D.J., Kerling, E., Lepping, R., Gustafson, K.M. (2014) LCPUFA supplementation in infancy improves response inhibition in childhood. 11th Congress of the International Society for the Study of Fatty Acids and Lipids. June 28-July 2, Stockholm, Sweden.

Colombo, J., Carlson, S.E., Gustafson, K.M., Gajewski, B., Shaddy, D.J., Kerling, E.K., Thodosoff, J., Bondurant, A. (2014) No effect of maternal prenatal DHA supplementation on MacAruthur-Bates and Bayley Scales at 18 months. 11th Congress of the International Society for the Study of Fatty Acids and Lipids. June 28-July 2, Stockholm, Sweden.


Judith Gross

In April, along with our partners Families Together, Inc., as part of their grant activities, Judith Gross conducted two FEAT trainings and related research for families with members with significant support needs and the professionals (e.g., teachers, case managers, employment specialists, benefits specialists) who support them to gain and maintain competitive employment in the community. They also provided a FEAT training in Emporia, KS and a bilingual (English and Spanish) FEAT training in Garden City, KS.

As a follow-up to these two trainings, they led follow-up technical assistance meetings in July 2014 held in the community’s Workforce Centers (another partner in the delivery of the research grant).

Gross and colleagues also have two trainings coming up in October in the communities of Derby and Wichita, KS.

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