Listing

Study Name Study Contact Basic Overview Criteria
Magnetoencephalographic Studies of Lexical Processing and Abstraction in Autism Spectrum Disorders Principal Investigator (PI)-Tim Roberts
Study Coordinator- Katherine Hines
Phone-215-590-0916
Email- MEGstudies@email.chop.edu
• To understand how a child’s brain processes sounds, words and pictures.
• To study brain activity differences between children with ASD and children with typical development.
• 6-15 years old with a diagnosis of ASD with language impairment.
• 6-15 years old.
• Typical developing.
autismMatch Principal Investigator (PI)-Robert Schultz
Study Coordinator- Julianne Fretz
Phone-866-570-6524
Email- autism@email.chop.edu
• To connect families and individuals with ASD with autism research studies at CAR and affiliated centers. • Children and adults with and without ASD.
Determining the Genetics of ASD Through Rapid Ascertainment Within A Regional Community Network Principal Investigator (PI)-Robert Schultz
Phone-866-570-6524
Email- autism@email.chop.edu
• To obtain and analyze DNA of 1000 individuals with ASD and compare them through to typically developing controls.
• To establish an ASD twin registry as a subset of the sample of 1000, this can be studied in more depth.
• 4 years old or older.
• Diagnosed with ASD or have a twin sibling with ASD.
• Enrollment in autismMatch, and completion of screening forms
• At least one parent or caregiver English speaking.
Neuropsychological, Neural, and Genetic Basis of Cognitive Control in ASD Principal Investigator (PI)-Benjamin Yerys
Phone-866-570-6524
Email- autism@email.chop.edu
• To correlate neuropsychological features, brain imaging features, and genetic risk factors in individuals with ASD and a typically developing (TDC) matched on age, gender-ratio, parental education, and general cognitive ability. • 6-17 years old.
• English child’s primary language.
• ASD diagnosis.
Biobehavioral Markers of Anxiety in Autism Spectrum Disorder Principal Investigator (PI)-John Herrington
Phone-866-570-6524
Email- autism@email.chop.edu
• To understand why some individuals with ASD also have other co-occurring problems such as anxiety. This knowledge may help researchers develop targeted treatments for ASD and co-occurring problems. • 7-17 years old • English is child’s primary language •ASD diagnosis • ASD + Anxiety diagnosis • Anxiety diagnosis • Typically developing
Genetic Causes for Complex Pediatric Disorders Principal Investigator (PI)-Hakon Hakonarson
Study Coordinator-Rosetta Chiavacci
Phone-267-426-0653
Email- chiavacci@email.chop.edu
• To study genetic causes for Pediatric Disorders, both common and rare (Crohn’s, diabetes, ADHD and autism). • Any child and their parents willing to sign consent and have blood samples obtained.
Speech Perception and Word Learning in Early Childhood Principal Investigator (PI)-Dan Swingley
Study Coordinator-Emily Steiner
Phone-215-746-0060
Email- stemily@sas.upenn.edu
• To understand how infants and children acquire language.
• To discover what children know about language above and beyond what children reveal through their own speech.
• 6 months – 2 years old.
• English-speaking.
• No known major hearing loss or known significant visual impairment, no significant mental impairments.
You Can Control Your Asthma Principal Investigator (PI)-Tyra Bryant-Stephens
Study Coordinator-Cannae Dirl
Phone-215-590-5261
Email- dirlc@email.chop.edu
• To identify high-risk children with asthma and enroll in care coordination program.
• To implement the You Can Control Asthma care coordination model within four practices.
• Ages 0-17 years old.
• Diagnosis of persistent asthma.
• Either 1 inpatient admission (IP) or 2 emergency department (ED) admissions.
• Prescribed controller medications.
• Medical Assistance as Primary Insurance.
Sacrolitis in Juevenile ERA and PsA Principal Investigator (PI)-Pam Weiss
Study Coordinator-Andy Klink
Phone-267-426-9719
Email- klinka@emial.chop.edu
• To determine the prevalence of sacroiliitis in children and adolescents with newly diagnosed ERA or PsA.
• To assess the accuracy of physical exam and a history of inflammatory back pain for the detection of sacroiliitis in children and adolescents.
• Males or females ages 8-18 years old.
• Diagnosed with ERA or PsA within last 6 months.
A Shared Decision Making Portal for Pediatric Chronic Care Principal Investigator (PI)-Alex Fiks
Study Coordinator-Stephanie Mayne
Phone-267-426-5257
Email- maynes@email.chop.edu
• To develop a shared decision-making (SDM) electronic medical record (EMR) based portal that that engages families of varied backgrounds and clinicians in the care of pediatric chronic illness. • Parents of children 6-12 years old diagnosed with persistent asthma.
Qualitative Assessment of Food Preparation Ability Principal Investigator (PI)-Chris Feudtner
Study Coordinator-Tim Pian
Phone-215-590-4819
Email- piant@email.chop.edu
• To gain a richer understanding of parental knowledge about food preparation and healthy eating. Household food preparation practices. Challenges parents perceive regarding food and feeding their toddlers in a healthy way.  Parental satisfaction with their current food preparation and feeding practices.
• To explore variation in food preparation ability between families from different socioeconomic status levels and diverse cultural backgrounds.
• 12-24 months old children in Philadelphia.
Leber’s Congenital Amaurosis ITMAT Principal Investigator (PI)-Manzar Ashtari
Study Coordinator-Laura Cyckowski
Phone-215-590-2563
Email- cyckowskil@email.chop.edu
• Evaluating cortical visual response in patients undergoing treatment for retinal degenerative disease. -Evaluating control subjects to establish normal visual function longitudinally. • Healthy males ages 11-14 years old.
The SCOUT Study Principal Investigator (PI)-Theo Zaoutis
Study Coordinator-Lesli Davis
Phone-215-495-2029
Email- davisl@email.chop.edu
• To determine if halting antimicrobial therapy in subjects who have exhibited clinical improvement 5 days after starting antibiotic therapy (short course therapy) have the same failure rate (symptomatic UTI) through TOC (visit Day 12-14) as subjects who continue to take antibiotics for an additional 5 days  (standard course therapy).
• To determine if short-course therapy compared to standard course therapy results in similar numbers of children experiencing a recurrent urinary tract infection (relapse and re-infection).
• <10 years old.
• No history of prematurity.
MRI and Cognitive Assessment of Children with CKD Principal Investigator (PI)-Susan Furth
Study Coordinator-Nina Laney
Phone-267-426-6758
Email- laneyn@email.chop.edu
• To demonstrate differences in brain imaging between the group of individuals with CKD and age-matched controls.
• To explore the impact of CKD on structural brain integrity as measured by anatomic MRI with quantitative volumetric measurements with a particular focus on prefrontal cortex and frontotemporal regions.
• To characterize the impact of longer duration and increased severity of CKD, HTN and anemia on neurocognitive.
• To develop individual-patient biomarkers by combining structural, ASL and fMRI data in multi-parametric classification.
• Matched controls to subjects with CKD.
Optical Measurement of Cerebral Hemodynamics in Children with Acute Arterial Ischemic Stroke Principal Investigator (PI)-Daniel Licht
Study Coordinator-Madeline Winters
Phone-
Email- WintersM@email.chop.edu
• The primary objectives are to determine the variability of CBF in healthy children as HOB position is altered and to determine whether noninvasive monitoring with optical spectroscopy can detect changes in cerebral blood flow as the HOB angle is varied over a range from -5 to +30 degrees in children with ischemic stroke.
• The secondary objective is to determine if the position that maximizes CBF varies over time from stroke onset.
• Healthy children ages 2-18 years old.
Primary Care Drug Therapeutics CER in a Pediatric EHR Network Principal Investigator (PI)-Alex Fiks
Study Coordinator-Stephanie Mayne
Phone-267-426-5257
Email- maynes@email.chop.edu
• To conduct four of proof-of-concept CER studies on psychotropic and asthma medication use and side effects plus an additional full-scale CER study on treatment for pediatric hypertension (HTN).
• To advance the methodology of pediatric pharmacoepidemiological CER using EHR
• data.
• To provide a platform for future CER studies in pediatric drug therapeutics and other topic areas.
• 6-18 years old on psychotropic medications.
• 0-5 years old on asthma medications.
• 3-18 years old on hypertension medication.
Family Safety Net Principal Investigator (PI)-Guy Diamond
Study Coordinator-Tita Atte
Phone-267-426-5104
Email- attet@email.chop.edu
• The primary objective of this study is to compare the efficacy of Attachment Based Family Therapy (ABFT) to Family enhanced Non-Directive Supportive Therapy (FE-NST) for reducing suicide ideation at post treatment (16 weeks) and follow up (32 and 52 weeks).
• The secondary objective is to compare the efficacy of ABFT to FE-NST for reducing secondary outcomes including suicide ideation, impression and family conflict at post treatment (16 weeks and follow-up 32 and 52 weeks).
• 14-24 years old.
Youth Suicide Prevention in Primary Care Principal Investigator (PI)-Guy Diamond
Study Coordinator-Stephanie Ewing
Phone-267-590-7565
Email- ewings@email.chop.edu
• To train physicians in suicide risk assessment.
• To implement a web-based behavioral health screening tool into the workflow of the clinical practice.
• To improve the linkages between the practice and mental health services to that identified patients can get mental health services more easily and rapidly.
• Any youth presenting with suicidal ideation.
Ascertainment of weight-bearing patterns during standardized exercises in normal children Principal Investigator (PI)-David Sherry
Study Coordinator-Jenna Tress
Phone-267-426-8153
Email- tressj@email.chop.edu
• To obtain normal values for weight-bearing patterns in normal children doing a variety of standardized exercises that are part of our amplified musculoskeletal pain program. • Healthy children ages 9 -16 years old.
Neurocognitive and cardiac outcomes in children with obstructive sleep apnea and Down syndrome Principal Investigator (PI)-Carole Marcus
Study Coordinator-Mimi Carroll
Phone-215-590-3862
Email- carrollmi@email.chop.edu
• To determine the effects of 4 months of positive airway pressure in the neurocognitive/behavioral and cardiac outcomes in children with Down syndrome and obstructive sleep apnea. • Children ages 8-16 years old with Down Syndrome.
Antibiotic Management of Outpatient Pediatric UTI’s Principal Investigator (PI)-Jeff Gerber
Study Coordinator-Carter Cowden
Phone-267-426-7668
Email- cowdenc@email.chop.edu
• Examine management patterns for UTI’s across CHOP Care Network. • All children with UTI diagnosis.
Cardiometabolic risk and obesity in adolescents with Down syndrome Principal Investigator (PI)-Sheela Magge
Study Coordinator-Divya Prasad
Phone-267-426-2778
Email- prasadd@email.chop.edu
• To compare the relationship between BMI-Z score and cardiometabolic risk factors in youth with DS, and in age, sex, race, ethnicity and BMI-Z score matched controls.
• To examine the relationship between obesity, lifestyle (physical activity, nutrition), body image, and quality of life in DS, and to explore barriers to maintaining a healthy weight in children with DS.
DS Group
• Males and females age 10 to 20 years.
• Diagnosis of DS.
• Parental/guardian permission (informed consent) and if appropriate, child assent.
Control Group
• Males and females age 10 to 20 years.
• Parental/guardian permission (informed consent) and if appropriate, child assent.
Assessment of the Fat-Bone Axis after Childhood Hematopoietic Stem Cell Transplantation Principal Investigator (PI)-Sogol Mostoufi-Moab
Study Coordinator-Elizabeth Isaacoff
Phone-267-426-7537
Email- isaacoffe@email.chop.edu
• To evaluate the associations between vertebral marrow adipose tissue (MAT), tibia trabecular microarchitecture, cortical dimensions, and IGF-1
levels in survivors of childhood hematopoietic stem cell transplantation (HSCT) after total body irradiation (TBI), compared with controls.
• To evaluate the associations between vertebral MAT, whole body fat mass, muscle density, and measures of insulin resistance in survivors of childhood HSCT after TBI, compared with controls.
• Allogeneic HSCT for acute leukemia, myelodysplastic syndrome, or bone marrow failure.
• TBI myeloablative HSCT conditioning regimen.
• Match related or unrelated donor.
• Peripheral, bone marrow or cord stem cell source.
• 12-30 yrs old.
Eating Pace Re-Training in Early Childhood Obesity Principal Investigator (PI)-Bob Berkowitz
Study Coordinator-Samantha Crabbe
Phone-215-590-2294
Email- crabbes@email.chop.edu
• To retrain children at risk for obesity to reduce their rate of eating during a laboratory test meal, compared with participants in usual care control condition, which receives a brief educational intervention to promote healthy after the final assessment. • 4-7 yrs old.
• Children have a BMI of 70th-94th percentile for age and sex.
• Have an overweight or obese biological mother with a BMI > 27kg/m2.
Healthcare Associated Respiratory Infection in the Ambulatory Setting Principal Investigator (PI)-Kristen Feemster
Study Coordinator-N/A
Phone-267-426-0192
Email- feemster@email.chop.edu
• To determine the risk for healthcare-associated respiratory infection after exposure to a clinic visit, to model the transmission of respiratory viral infection in an ambulatory setting and, to measure variation in nosocomial infection rates across clinic sites that may reflect differences in infection control practices, and to use these estimates to model the transmission of respiratory viral infection in ambulatory care settings. • Children < 6 yrs old who have had a non influenza-like illness during the winter respiratory season (September 1st 0 April 30th).
• Children < 6 yrrs old who have an influenza-like illness for 2 consecutive winter respiratory seasons (September 1st – April 30th).
Retail Pharmacy Vouchers to Promote Tdap Vaccination for Adults Living with Infants Principal Investigator (PI)-Kristen Feemster
Study Coordinator-Valerie McGoldrick
Phone-267-426-0654
Email- mcgoldrickvm@email.chop.edu
• To conduct a small-scale randomized controlled trial to assess the feasibility and acceptability of an innovative intervention to increase Tdap immunization rates among caregivers
of newborn infants. The intervention takes advantage of the newborn primary care visit to provide Tdap vaccine vouchers for neighborhood retail pharmacies along with video-based
education about the importance of Tdap
vaccination in adult caregiver to protect infants from pertussis.
• Parents of newborn at their first office visit.
Impact of Diet Composition on Energy Balance and Satiety during Infancy Principal Investigators (PIs)- Julie Mennella and Jillian Trabulsi
Investigator- Virginia Stallings                                                  Study Coordinator- Loma Inamdar
Phone-267-519-4888
Email- InamdarL@email.chop.edu
• To explore energy balance mechanisms (energy intake, energy expenditure, energy loss) and growth during the first year of life in formula fed infants randomized to one of two different types of infant formulas that are currently on the market. Target age of enrollment is when the infant is 7-14 days old. Study requires monthly study visits where the infant will be weighed and measured and mom will answer questionnaires; the next month’s formula is distributed at this time. The study team will continue to follow the infant until he/she is 18 months of age. Inclusion criteria
Mothers must be older than 18 years of age.
At birth, infants must be:
• A healthy, term (≥37 and ≤42 week gestation at birth), singleton infant.
• Birth weight between 2500 – 4500 grams.At the time of enrollment, infants must be:
• ≤14 days old (Date of birth=day 0).
• Consuming a standard cow’s milk protein infant formula for at least the past 2 days prior to enrollment.Exclusion criteria
• Infants who were preterm or have medical conditions that interfere with feeding and/or metabolism or who are lactose intolerant will be excluded from this study.
Validating a Tool to Examine Shared Decision Making (SDM) for Pediatricians and Parents of Children with Chronic Illness Principal Investigator (PI)-Jennifer Walter
Study Coordinator-Folasade Odeniyi
Phone-267-426-9727
Email- odeniyif@email.chop.edu
• To help researchers measure multiple dimensions of shared-decision making and determine which aspects of communication parents prioritize, in addition to determine whether parents possess many of the relevant capacities to participate meaningfully in the aspects of communication that they value.
• To improve understanding of the factors that impact shared-decision making, ultimately strengthening communication between providers, patients, and their caregivers.
• English-speaking parents or guardians who are 18 years or older.
• Children under the age of 14 years old who come in for a well-child or sick visit.
Exploration of the Effect of Positive Reinforcement on Teen Driving Behavior Principal Investigator (PI)-Yi-Ching Lee
Study Coordinator-Dana Bonfiglio
Phone-267-426-7031
Email- bonfigliod@email.chop.edu
• To gather teen and young drivers’ perspectives on positive reinforcement through reviews of technologies, collection of qualitative and quantitative data, and discussion with experts. •English speaking 17-20 years olds.                                          •Subject holds an unrestricted driver’s license.
The Association of Depression and Anxiety with Outpatient Medical Services Utilization in Pediatric Lupus and Mixed Connective Tissue Disorder Principal Investigator (PI)-Andrea Knight
Phone-267-426-9135
Email- knightan@email.chop.edu
• To investigate the prevalence of depression and anxiety in CHOP lupus/mixed connective tissue disorder (MCTD) cohort, comparing to healthy child/adolescent population.
• To determine the association of depression and anxiety with healthcare utilization, quality of life, physical function.
• Age 8 years old and above.
• English-speaking.
• No chronic medical condition (Diabetes, IBD, persistent asthma (intermittent allowed), cerebral palsy, sickle cell anemia, cystic fibrosis, cancer, HIV/AIDS, congenital heart disease, any other chronic autoimmune, hematologic, pulmonary, renal, gastrointestinal, neurological or musculoskeletal condition).
• No current use of steroids.
Spinal Kinematics in Adults and Children Principal Investigator (PI)-Kristy Arbogast
Study Coordinator-Thomas Seacrist
Phone-267-426-5432
Email- seacrist@email.chop.edu
• The differences in dynamic flexibility of the cervical and thoracic spine and trajectory of the head and other relevant body regions of child volunteers subjected to non-injurious frontal, oblique, and lateral low-speed loading will be determined. • Healthy children ages 6-8 years old.
An Open Label Demonstration Project & Ph 2 Safety Study of Pre-Expos Prophylaxis use among YMSM Principal Investigator (PI)-Sarah Wood
Study Coordinator-Alison Lin
Phone-267-426-5689
Email- lina1@email.chop.edu
• To obtain additional data on the safety of FTC/TDF (Truvada®) and to evaluate patterns of use, rates of adherence, and patterns of sexual risk behavior among high-risk HIV-1 uninfected YMSM in the U.S. who are provided with open label FTC/TDF (Truvada®) as PrEP and information on the safety and efficacy of PrEP from prior studies. This project will explore the feasibility and acceptability of implementing two different types of efficacious risk reduction interventions prior to the provision of PrEP – Many Men, Many Voices (3MV) and Personalized Cognitive Counseling (PCC). • HIV-negative YMSM, including transgender women, ages 18-22 years old.
Chair’s Initiative on Bullying and Victimization Principal Investigator (PI)-Steven Leff
Study Coordinator-Wanda Moore
Phone-267-426-7879
Email- moorew@email.chop.edu
• To assess provider knowledge of the different forms of bullying and the strategies for supporting adolescents affected by these issues.

• To develop and finalize resources for clinical application during routine patient care.

• All clinicians participating in a primary care setting.
Study of Female Teens: Understanding Risk to
Promote Breast Health II
(The SOFT II Study)
Principal Investigator (PI)-Angela Bradbury
Study Coordinator-Dare Henry-Moss
Phone-215-662-2756
Email- dare.henry-moss@uphs.upenn.edu
• To evaluate the relationship between breast cancer risk and psychosocial adjustment, cancer specific stress-response and health and risk behaviors in 11-19 years old girls and how these relationships change over time.

• To explore biopsychosocial factors that might mediate and moderate the relationship between breast cancer risk and psychosocial adjustment, cancer specific stress-response and health behaviors and changes in these outcomes over time.

• To explore mother reported content and method of mother communications to 11-19 year old daughters among BRCA1/2 carriers and the relationshop between the content fo communication and daughter psychosocial adjustment and cancer specific distress and health behaviors.

• Teenage girls, ages 11-19 years old and their mother.
A Pilot Study Evaluating the Transmission and Early Viral Dynamics in Maternal-Fetal Transmission of Hepatitis C Virus Principal Investigator (PI)-Jessica Wen
Study Coordinator-Lindsay Brown
Phone-267-426-0970
Email- brownl7@email.chop.edu
• To examine the complexity of the HCV viral genome circulating in infected infants and to quantify the number of individual HCV species leading to productive clinical infection in mother to child HCV transmission using a novel viral sequencing. This will help gain better insights into the barrier an vaccine or prophylaxis medication must overcome to be successful in preventing HCV transmission. • Infants 6 months and younger born to mothers with Hepatitis C.
Keeping Kids Safe and Smoke Free (KISS) Principal Investigator (PI)-Tyra Bryant-Stephens
Study Coordinator-Cannae Dirl
Phone-215-590-5261
Email- dirlc@email.chop.edu
• To provide partnering physicians and clinic staff with a clinic-level quality improvement intervention to address Second Hand Smoke exposure (SHSe) in the four urban pediatric clinics. • Children ages 0-11 years old exposed to second hand smoke.
Development of Methods for Identifying Child & Parent Health Outcomes Principal Investigator (PI)-Katherine Bevans
Study Coordinator- Lucia Pattullo
Phone- 267-426-1463
Email- pattullol@email.chop.edu
• To develop and evaluate novel methods for eliciting and prioritizing children’s health outcomes that are  comprehensible to both patients and clinicians, measurable, and ready for integration in clinical and comparative effectiveness research. • Children 12-17 years old.
• Parents of children 8-17 years old.
Parenting Goals for Outpatient Children with Serious Chronic Conditions Principal Investigator (PI)-Chris Feudtner
Study Coordinator- Linda Williamson
Phone- 267-425-9833
Email- williamsonl@email.chop.edu
• To augment our understanding of the TBGP heuristic, assessing whether the attributes that parents value regarding how TBGP vary not only by disease severity but also by where the patient is currently residing, adding to existing samples consisting of hospitalized patients a sample of comparable patients residing at home. • Parents of children with chronic illness/disease.
Screening for Intimate Partner Violence in Primary Care Principal Investigator (PI)-Philip Scribano
Study Coordinator- Tara Wedin
Phone- 215-531-0352
Email- wedint@email.chop.edu
• To explore the knowledge, attitudes, and beliefs of  Primary Care clinicians about their role in identifying adverse childhood experiences (ACEs) and whether or not the Emergency Room should also be screening for specific ACEs including domestic violence.
• To identify perceived barriers toward and preferences for electronic IPV screening in the Primary Care office as the first step toward designing an Emergency Department and Primary Care Office based IPV screen.
• Attending physicians, nurse practitioners, registered nurses and social workers.