Participate in Research Studies

Executive Functions in Reading

Study Name: The Role of Executive Functions in Reading and Reading Remediation (IRB #: 00207805, Principal Investigator: Keri Rosch, Ph.D. and Co-Principal Investigator: Horowitz-Kraus Tzipi, Ph.D.).

Funding: Kennedy Krieger Institute

Description:The aim of this study is to help children with reading disabilities read faster and more accurately and to examine the effects of a reading accelerated program.

For more information, please click here.

Understanding Motor Movement in Children With and Without ADHD

Study Name: Anomalous Motor System Physiology in ADHD: Biomarker Validation and Modeling Domains of Function (IRB#: 00251063, Principal Investigator: Dr. Stewart Mostofsky, M.D.)

Funding: National Institute of Mental Health (Award #: 5R01MH078160-13)

Description: This research study investigates neural biomarkers (specific electrical signals in the motor area of the brain that control muscle movement and movement planning) associated with attention deficit/hyperactive disorder (ADHD). During the research appointments, participants complete a cognitive assessment, questionnaires, computer games that assess cognitive skills, movement activities that assess balance and coordination, and two 2-hour sessions of transcranial magnetic stimulation (TMS).

Application and Validation of the RITA-T (Rapid Interactive screening Test for Autism in Toddlers) in Children 3-5 years Old

The goal for this project is to evaluate the psychometrics of the RITA-T in children 3-5 years old and see how this interactive measure works at this age.

We are recruiting:

• Children ages 3 years to 5y 0 months of any ethnicity and race, and language whose caregiver speaks English, coming for an evaluation because of language or developmental delays, or concerns of autism at CASSI or at the Center for Development and Learning (CDL).
• Children ages 3 years to 5y 0 months of any ethnicity and race, and language whose caregiver speaks English coming for their well-child visits at the Harriet Lane Clinic.

A member from our research team will meet participating families at the CDL on Broadway, or at CASSI on Greenspring, or at the Harriet Lane Clinic and administer the RITA-T. The study visit will take approximately 30 minutes.

Parking vouchers will be provided when necessary, and children will receive a gift bag with age-appropriate toys upon completion of the study visit.

Thank you and please let us know if you have any questions!: RITA-T@kennedykrieger.org

View study flyer

Are you a parent/caregiver of a child with developmental delay or autism?

The purpose of this study is to understand community providers and caregivers' attitudes and perceptions on autism/developmental delay diagnoses. The goal is to then develop a developmental/screening training program for providers and to create more resources for families.

Can you help us recruit families? Please see the attached flyer if your families with children with developmental delay or autism are interested to participate.

Early childhood providers: please complete the Qualtrics survey linked below if you are interested in participating. You will find an informed consent form at the beginning of the survey. Completing the survey will serve as your consent. Responses are anonymous, and participation is voluntary. We appreciate you completing our survey and sharing your insight and experiences!

Survey Link

Thank you and please let us know if you have any questions!

RITA-T@KennedyKrieger.org

Developing New Diagnostic Tools for Autism

Study Name: Computerized Assessment of Motor Imitation (CAMI): Advancing the Validity, Scalability and Neurophysiology of a Promising Phenotypic Biomarker for Autism Spectrum Disorder (IRB#: 00269589, Principal Investigator: Dr. Stewart Mostofsky, M.D.)

Funding: Simons Foundation (Award #: 724867)

Description: This research study investigates a new method of identifying early symptoms of autism spectrum disorders, using a computerized assessment of motor imitation (CAMI). The CAMI method uses 2D and 3D motion-capture cameras to identify and quantify differences in imitation ability and speed. During the two half-day (4 hours) appointments, participants complete a cognitive assessment, computer games assessing executive functions, movement activities assessing coordination and balance, and an imitation activity using 2D and 3D motion-capture cameras.

Exploring Sleep Patterns and Differences in Children with Autism and Neurotypical Children

Study Name: Sleep Patterns and Brain Development in Children with Autism Spectrum Disorder (IRB #: 00318498, Principal Investigator: Stewart Mostofsky, M.D.)

Funding: National Institute of Child Health and Human Development (Award #: 5P50HD103538-03)

Description: This research study examines brain-based differences in childhood sleep patterns associated with autism spectrum disorders. Participants complete a half-day (4 hours) appointment that includes a cognitive assessment, a saliva collection using a saliva sampling kit, a 30-minute practice Magnetic Resonance Imaging (MRI) scan to learn about the MRI scanning environment, and a 1-hour MRI scan. Participants also receive an actiwatch and sleep journal to take home for two weeks. The actiwatch is a device similar to a FitBit that collects data on light exposure and movement to assess sleep disruption.

Online Research Opportunity ages 12 – 36 months

Description: Child development researchers at Kennedy Krieger Institute are studying a new social communication screening tool for children ages 12-36 months.

What is involved?

• Brief online questionnaire about your family (15 minutes)
• Online developmental screeners (approximately 1 hour)
• For some families a telehealth developmental assessment with you and your child, and feedback with a developmental specialist (approximately 2 hours)

Social Communication Intervention for Toddlers with Autism Spectrum Disorder

Study Name: Do you have a child 18 to 33 months old with autism spectrum disorder?

Description: Researchers at Kennedy Krieger Institute are studying whether there are differences between in-person and virtually delivered social communication intervention for toddlers with autism spectrum disorder.

This study includes: 

• Questionnaires about your child and you
• Developmental assessments
• Random assignment to either virtual or in-person intervention sessions
• No significant risks associated with participation

If eligible, families will receive:

• Intervention for 12 weeks
• Information about your child's development
• $50 after study completion

The Balance Study – Bipolar Disorder (Allergan)

Description: Bipolar depression can change the way a child or teen interacts with the world around them. If you or your child have bipolar depression, we are inviting you to take part in the Balance Study for children and teens, aged 10 to 17 years of age, who have been struggling with bipolar depression. The purpose of this study is to evaluate an investigational drug for bipolar depression in children and teens. The Balance Study will enroll about 380 children and teens with bipolar depression at participating study centers throughout North America and Europe.  

Are you a parent/caregiver of a child with developmental delay or autism?

The purpose of this study is to understand community providers and caregivers' attitudes and perceptions on autism/developmental delay diagnoses. The goal is to then develop a developmental/screening training program for providers and to create more resources for families.

Can you help us recruit families? Please see the attached flyer if your families with children with developmental delay or autism are interested to participate.

Early childhood providers: please complete the Qualtrics survey linked below if you are interested in participating. You will find an informed consent form at the beginning of the survey. Completing the survey will serve as your consent. Responses are anonymous, and participation is voluntary. We appreciate you completing our survey and sharing your insight and experiences!

Survey Link

Thank you and please let us know if you have any questions!

RITA-T@KennedyKrieger.org

To explore how individual members of the family are affected by caregiver burden when providing care for a child with special needs.

Description: The outcome of this study would provide targeted counseling approaches and respite for family members of children with special needs based on identified areas of burden.

Research Opportunity for Children and Adults with Cerebral Palsy and/or Caregivers

Study name: Children and adults with cerebral palsy (CP) and/or their caregivers are needed to participate in a research study.

Description: This research is being done to find risk factors for chronic pain in people with cerebral palsy (CP).  We are also looking at the effects of pain on function, independence and quality of life in people with CP. People will be asked to complete online questionnaires at your convenience.

Participants will be emailed links to online questionnaires that will take 30 – 60 minutes to complete. The questions will be about medical diagnoses, quality of life and other factors that might influence pain.  Participants will receive $25 for completing all questionnaires.

Valbenazine for the Treatment of Dyskinesia Due to Cerebral Palsy (Neurocrine)

Description: A Phase 3, Randomized, Double-Blind, Placebo-Controlled Study to Assess the Efficacy, Safety, and Tolerability of Valbenazine for the Treatment of Dyskinesia Due to Cerebral Palsy (Neurocrine).

Perinatal Arterial Stroke: A Multi-site RCT of Intensive Infant Rehabilitation (I-ACQUIRE)

Description: I-ACQUIRE, a form of constraint-induced movement therapy (CIMT), is being evaluated - in two dosages – compated to typical treatments for children with hemiparesis, such as one hour weekly each of occupational therapy and physical therapy. Both dosages involve therapy fice days a week for four consecutive weeks, provided by a therapist trained in I-ACQUIRE. You’re infant or toddler may be eligible if he or she had a stroke very early in life and shows motor weakness or poor movement control on one side (hemiparesis.

Valbenazine for the Treatment of Dyskinesia Due to Cerebral Palsy (Neurocrine)

Description: A Phase 3, Randomized, Double-Blind, Placebo-Controlled Study to Assess the Efficacy, Safety, and Tolerability of Valbenazine for the Treatment of Dyskinesia Due to Cerebral Palsy (Neurocrine).

A Phase 1b, Single Ascending Dose, Randomized, Double-Blind Study to Evaluate SAR439459 for the Treatment of Osteogenesis Imperfecta in Adults

Epidiolex^® For the Treatment Of Anxiety Comorbidity In Refractory Pediatric Epilepsy (EAPE)

Description: This research study titled, Epidiolex® For the Treatment Of Anxiety Comorbidity In Refractory Pediatric Epilepsy (EAPE), is being conducted by Dr. Jay Salpekar to evaluate if the drug FDA approved drug, Epidiolex®, helps control anxiety and mood symptoms associated with recurrent seizures in addition to seizure control. The length of the study is 4 months and consists of 11 visits; some are remote and some are onsite.

If you or a family member have any questions or are interested in learning more about the study please contact the study staff by replying to this notice or by contacting the staff directly with the information below.

The Balance Study – Bipolar Disorder (Allergan)

Description: Bipolar depression can change the way a child or teen interacts with the world around them. If you or your child have bipolar depression, we are inviting you to take part in the Balance Study for children and teens, aged 10 to 17 years of age, who have been struggling with bipolar depression. The purpose of this study is to evaluate an investigational drug for bipolar depression in children and teens. The Balance Study will enroll about 380 children and teens with bipolar depression at participating study centers throughout North America and Europe.  

A Randomized, Double-Blind, Placebo-Controlled Study in Male Adolescents with Fragile X Syndrome (TETRA 204)

Description: A Randomized, Double-Blind, Placebo-Controlled, Two-Part Study of BPN14770 in Male Adolescents (Aged 9 To <18 Years) with Fragile X Syndrome.

A Randomized, Double-Blind, Placebo-Controlled Study in Male Adults with Fragile X Syndrome (TETRA 301)

Description: A Randomized, Double-blind, Placebo-controlled, Parallel Group Study ofBPN14770 in Male Adults (Aged 18 to 45) with Fragile X Syndrome.

ZYN002 Administered as a Transdermal Gel to Children, Adolescents, and Young Adults for Treatment of Fragile X Syndrome

Description:  A Randomized, Double-Blind, Placebo-Controlled, Multiple-Center, Efficacy and Safety Study of ZYN002 Administered as a Transdermal Gel to Children, Adolescents, and Young Adults with Fragile X Syndrome – RECONNECT

Forward-March Fragile X Study

Description:  FORWARD-MARCH is the next step following a highly successful research study called FORWARD (Fragile X Online Registry With Accessible Research Database) that was started in 2012. The FORWARD study created the largest database of information on fragile X syndrome (FXS) in the United States. Data from the FORWARD study is being used by researchers to learn about the lives of people with FXS, including medication use, behaviors, and development over time, and share findings with other researchers and clinicians.

Cornelia de Lange Behavior Study

Description: Does your child with CdLS display problem behavior? Some children with Cornelia de Lange syndrome engage in behaviors that are harmful to themselves (e.g., head banging, head hitting, self-biting), are harmful to others (e.g., hitting, kicking), or are harmful to the environment (e.g., ripping/breaking/tearing things, banging on surfaces, kicking objects). Sometimes these problem behaviors negatively impact children or their families to the point that treatment is needed. Children with CdLS, who are between the ages of 3 to 15 years old, and who exhibit these types of problem behaviors are needed for a research study. Parents will be asked to complete questionnaires about their child’s behavior, and behavioral assessment and treatment of the problem behaviors will be provided at no charge to the family. Families will be asked to attend 2 full-day clinic visits and 1 half-day clinic visit at Kennedy Krieger Institute. Families will also participate in phone follow-up calls for 3 months after treatment. Families will receive $150 for their participation.

Epidiolex^® For the Treatment Of Anxiety Comorbidity In Refractory Pediatric Epilepsy (EAPE)

Description: This research study titled, Epidiolex® For the Treatment Of Anxiety Comorbidity In Refractory Pediatric Epilepsy (EAPE), is being conducted by Dr. Jay Salpekar to evaluate if the drug FDA approved drug, Epidiolex®, helps control anxiety and mood symptoms associated with recurrent seizures in addition to seizure control. The length of the study is 4 months and consists of 11 visits; some are remote and some are onsite.

If you or a family member have any questions or are interested in learning more about the study please contact the study staff by replying to this notice or by contacting the staff directly with the information below.

A Randomized, Double-Blind, Placebo-Controlled Study in Male Adolescents with Fragile X Syndrome (TETRA 204)

Description: A Randomized, Double-Blind, Placebo-Controlled, Two-Part Study of BPN14770 in Male Adolescents (Aged 9 To <18 Years) with Fragile X Syndrome.

Forward-March Fragile X Study

Description: FORWARD-MARCH is the next step following a highly successful research study called FORWARD (Fragile X Online Registry With Accessible Research Database) that was started in 2012. The FORWARD study created the largest database of information on fragile X syndrome (FXS) in the United States. Data from the FORWARD study is being used by researchers to learn about the lives of people with FXS, including medication use, behaviors, and development over time, and share findings with other researchers and clinicians.

A Randomized, Double-Blind, Placebo-Controlled Study in Male Adults with Fragile X Syndrome (TETRA 301)

Description: A Randomized, Double-blind, Placebo-controlled, Parallel Group Study ofBPN14770 in Male Adults (Aged 18 to 45) with Fragile X Syndrome.

ZYN002 Administered as a Transdermal Gel to Children, Adolescents, and Young Adults for Treatment of Fragile X Syndrome

Description:  A Randomized, Double-Blind, Placebo-Controlled, Multiple-Center, Efficacy and Safety Study of ZYN002 Administered as a Transdermal Gel to Children, Adolescents, and Young Adults with Fragile X Syndrome – RECONNECT

Computerized Reading Intervention Research Study

Study Name: The Role of Executive Functions in Reading and Reading Remediation (IRB #: 00207805, Principal Investigator: Keri Rosch, Ph.D. and Co-Principal Investigator: Horowitz-Kraus Tzipi, Ph.D.)

Funding: Kennedy Krieger Institute

Description: The aim of this study is to help children with reading disabilities read faster and more accurately and to examine the effects of a reading accelerated program.

For more information, please click here.

Have you been diagnosed with Cerebral X-linked Adrenoleukodystrophy (cALD)

Description: Learn more about MT-3-01 study, the clinical study that is assessing the efficacy and safety of leriglitazone on the progression of cerebral X-linked Adrenoleukodystrophy (cALD).

The HEALthy Brain and Child Development (HBCD) Study

Description: The HEALthy Brain and Child Development Study (HBCD) is a large, long-term study of early brain and child development, funded by 12 offices of the National Institutes of Health (NIH). Johns Hopkins University/Kennedy Krieger Institute is one of the 25 study sites across the United States. We are asking families in Maryland and across the United States to join our study and hope you will too! We will follow you and your baby from pregnancy through early childhood. We want to learn how your baby grows and develops. And because every person and family is different, we want to understand how the brain develops. We want to know how your baby is affected by his or her exposure to substances and other environmental conditions during pregnancy and after birth. To learn about this we will collect information during pregnancy and through early childhood, including:

• Pictures of the baby's brain using MRI
• Growth measurements like height and weight
• Samples from mom and baby, like urine, and saliva, and maternal blood
• Medical and family information
• Information about the home, feelings, and development

A Phase 1b, Single Ascending Dose, Randomized, Double-Blind Study to Evaluate SAR439459 for the Treatment of Osteogenesis Imperfecta in Adults

Recruiting children with sickle cell disease under 5 years of age.

Description: Researchers at the Kennedy Krieger Institute and the Johns Hopkins Hospital are looking for volunteers to participate in a research study on neurodevelopment in young children with sickle cell disease.

To participate in the study, your child must:

• Be under 5 years of age
• Have a diagnosis of sickle cell disease
• Be willing to have a neurodevelopmental evaluation.

This study involves 3 study visits involving:

• History and neurological examination
• Neuropsychological testing
• MRI of the brain
• Blood sample completed at one of the visits above

After the 3 visits above, this study may require annual visits until age 5, including neurological exam and blood sample collection. At their final visit at age 5, this study will require neurological examination, neuropsychological testing, MRI of the brain, and blood sample collection.  Participations will receive compensation .

Are you interested in a study on hearing loss and dizziness?

Description: Researchers at the Kennedy Krieger Institute and the Johns Hopkins Hospital are looking for volunteers to participate in a research study on hearing loss and dizziness.

To participate in the study, you must:

• Be between the ages of 18 to 80 years
• May or may not have a diagnosis of sickle cell disease

This study involves:

• Short survey
• Neurological examination
• Hearing and dizziness testing

Compensation provided.

Are You/Your Child Still Struggling with Schizophrenia?

Description: Join a Clinical Research Study. For adolescents 12 to 16 years old diagnosed with schizophrenia

Seven visits conveniently scheduled at Kennedy Krieger Institute over 10 weeks

Each visit lasts from 2 to 3 hours

There is compensation for time and travel for each visit

The purpose of the study is to determine if study drug Na-Ben (sodium benzoate), added on to existing treatment, is safe and effective.

Online Research Opportunity ages 12 – 36 months

Description: Child development researchers at Kennedy Krieger Institute are studying a new social communication screening tool for children ages 12-36 months.

What is involved?

• Brief online questionnaire about your family (15 minutes)
• Online developmental screeners (approximately 1 hour)
• For some families a telehealth developmental assessment with you and your child, and feedback with a developmental specialist (approximately 2 hours)

Adults with spinal cord injury needed to participate in a 4-week cycling program

Description: We are looking for adults with spinal cord injury (SCI) who can participate in a 4-week cycling program. Structural and functional MRI scans of the brain and spinal cord will be used to study the effect of the cycling program.

Who: Adults, age 18-99 with ASIA A-D traumatic thoracic injury without lower motor neuron involvement. To participate, you must be at least 6 months out from the injury, and be in satisfactory general health..

What: You will be asked to participate in a 4-week cycling program at the International Center for Spinal Cord Injury (ICSCI). At the beginning of the program, you will be assigned to either a Functional Electric Stimulation (FES) cycling group or a passivecycling group. The 4-week program will consist of a total of 12 cycling sessions (3 times/week, 1 hour/session). On the day of (or on a separate day close to) your 1st, 6th, and 12th cycling visit, you will also receive an ASIA neurological exam, a SCIM functional evaluation, and a structural and functional magnetic resonance imaging of the brain and spinal cord (total of 3 ASIA exams and 3 MRI). During the imaging, we will ask you to lie still in the MRI while we take pictures of your brain and spinal cord. The neurological exam and imaging will last approximately 60 minutes each (120 minutes total). If you have your own FES RT300 cycling bike, you will have an option to cycle at home using televisits. The screening and MRI visits will still be conducted at KKI in person.

Risks: The effects of magnetic fields in an MRI scanner have been extensively studied, and there are no known significant risks with an MRI exam.

Benefits: There is no direct benefit to you from being in this study. This study may benefit others in the future by improving methods for the study of nervous system structure and function. If you complete the study, you will be reimbursed $150 for participation and an additional $60 for the cost of transportation (total of $210; in the form of a check).

Where: The International Center for Spinal Cord Injury at Kennedy Krieger Institute, The Broadway Campus (707 North Broadway, Baltimore, MD). You will have an option to perform the FES cycling in the Maple Lawn Campus (11830 West Market Place, Suite P, Fulton, MD 20759)..

What is your stomach saying to your brain?

Description: Healthy volunteers are needed for a research study on how stomach activity and brain activity are related. Stomach activity is monitored using electrodes placed on the skin of the abdomen; brain activity is monitored using MRI.

Who: Healthy adults, age 18-49.

Where: F.M. Kirby Research Center for Functional Brain Imaging at Kennedy Krieger Institute, 707 N Broadway, Baltimore MD.

When: About one-and-a-half hours on each of two mornings (close together). Before one morning, you will be asked to fast overnight (no food after dinner).

What: You will receive $50 compensation on conclusion of second scan.

Computerized Reading Intervention Research Study

Study Name: The Role of Executive Functions in Reading and Reading Remediation (IRB #: 00207805, Principal Investigator: Keri Rosch, Ph.D. and Co-Principal Investigator: Horowitz-Kraus Tzipi, Ph.D.)

Funding: Kennedy Krieger Institute

Description: The aim of this study is to help children with reading disabilities read faster and more accurately and to examine the effects of a reading accelerated program.

For more information, please click here.

Developing New Diagnostic Tools for Autism

Study Name: Computerized Assessment of Motor Imitation (CAMI): Advancing the Validity, Scalability and Neurophysiology of a Promising Phenotypic Biomarker for Autism Spectrum Disorder (IRB#: 00269589, Principal Investigator: Dr. Stewart Mostofsky, M.D.)

Funding: Simons Foundation (Award #: 724867)

Description: This research study investigates a new method of identifying early symptoms of autism spectrum disorders, using a computerized assessment of motor imitation (CAMI). The CAMI method uses 2D and 3D motion-capture cameras to identify and quantify differences in imitation ability and speed. During the two half-day (4 hours) appointments, participants complete a cognitive assessment, computer games assessing executive functions, movement activities assessing coordination and balance, and an imitation activity using 2D and 3D motion-capture cameras.

Online Research Opportunity ages 12 – 36 months

Description: Child development researchers at Kennedy Krieger Institute are studying a new social communication screening tool for children ages 12-36 months.

What is involved?

• Brief online questionnaire about your family (15 minutes)
• Online developmental screeners (approximately one hour)
• Telehealth developmental assessment with you and your child, and feedback with a developmental specialist.

Research Opportunity for Healthy Children or Adults

Study Name:  Healthy children or adults without neurologic or developmental diagnoses and/or caregivers

Description: This research is being done to find risk factors for chronic pain in people with cerebral palsy (CP).  We are also looking at the effects of pain on function, independence and quality of life in people with CP. People will be asked to complete online questionnaires at your convenience.

Participants will be emailed links to online questionnaires that will take 30 – 60 minutes to complete. The questions will be about medical diagnoses, quality of life and other factors that might influence pain.  Participants will receive $10 for completing all questionnaires.

Computerized Reading Intervention Research Study

Study Name: The Role of Executive Functions in Reading and Reading Remediation (IRB #: 00207805, Principal Investigator: Keri Rosch, Ph.D. and Co-Principal Investigator: Horowitz-Kraus Tzipi, Ph.D.)

Funding: Kennedy Krieger Institute

Description: The aim of this study is to help children with reading disabilities read faster and more accurately and to examine the effects of a reading accelerated program.

For more information, please click here.

Research Volunteers Needed

Study Name: Seeking typically developing children (3 to 17 years old) and adults to participate in a research study at Kennedy Krieger Institute and Johns Hopkins Medicine 

Description:  Participate either from home or in the lab in Baltimore, MD

At Home Option: you will need a computer connected to the internet and you will be asked to complete a game on a website.

In Lab Options (choose as many as you would like): computer-based tasks, treadmill walking tasks, virtual reality tasks, reaching tasks with a robot, and an MRI scan where we take pictures of your brain while you look at pictures, move your arm, or squeeze a device.

There are no medical benefits or significant risks to you for joining this research study. Participation will take 1-5 hours (with multiple visits possible). Participants will be compensated for their time. WHO: Children with Tourette Syndrome and typically developing children

Typically Developing Participants – Ages 6 - 17

Description: We are recruiting neurotypical developing children and adolescents to participate in a research study to learn if there are differences between the brain’s structure and its function in children and adolescent without a neurodevelopmental disorder. This is a great opportunity for children and adolescents to participate in computer games, paper & pencil tasks, a Magnetic Resonance Imagining (MRI) scan of their brain and a free IQ test.

Participants can earn up to $50 per day and will receive an IQ report, radiology report and a picture of their brain!