A Study About Aromatic L-Amino Acid Decarboxylase Deficiency (AADC) in Pediatric Patients

Official Title
A Single-Stage, Adaptive, Open-Label Dose Escalation Safety Study of Adeno-Associated Virus Encoding Human Aromatic L-Amino Acid Decarboxylase (AAV2-hAADC) Administered by MR- guided Infusion into the Midbrain in Pediatric Patients with AADC Deficiency
Purpose

The overall objective of this study is to determine the safety and efficacy of AAV2-hAADC delivered to the substantia nigra pars compacta (SNc) and ventral tegmental area (VTA) in children with aromatic L-amino acid decarboxylase (AADC) deficiency, and to see if there is a demonstration of effective restoration of AADC function by assays of CSF neurotransmitter metabolites and F-DOPA PET imaging, as allowed by subject’s ability to travel to undergo follow-up visits.

Could this study be right for you?

Inclusion Criteria

  • Diagnosis of AADC deficiency from genetic test and CSF/blood enzyme test
  • Failed to derive adequate benefit from standard medical therapy as judged by presence of residual oculugyric crises and developmental delay.
  • Documented history of motor developmental delay, with inability to walk independently without support by age 18 months.
  • Both parents (or legal guardians) must give their consent for their child’s participation in the study parents unless (i.) one parent is deceased, unknown or incompetent; (ii.) one parent is not reasonably available; or (iii.) one parent has responsibility for the care and custody of the child.

Inclusion Criteria varies, please contact Study Coordinator for more information.

Exclusion Criteria

  • Presence of other significant medical or neurological conditions that would create an unacceptable operative or anesthetic risk.
  • Previous stereotactic neurosurgery.
  • Coagulopathy, or need for ongoing anticoagulant therapy.
  • Receipt of any investigational agent within 60 days prior to Baseline and during study participation.

Exclusion Criteria varies, please contact Study Coordinator for more information. 

Age Range
2 years and up

Emerging Adulthood and Parenthood Study

Official Title
Emerging Adulthood and Parenthood Study
Purpose

The Emerging Adulthood and Parenthood Study is a qualitative study designed to identify relevant factors and themes related the transitions to adulthood and parenthood in a sample of fathers. We will use qualitative, semi-structured interviews with parents to extract these themes and discuss important aspects about transitioning through life stages. After conducting these interviews, the identified themes will be utilized in the creation of questionnaire to measure the transition to parenthood. The goal of the study is to create a self-report questionnaire measure that captures the domains of emerging adulthood and emerging parenthood.

We are currently looking to recruit fathers for our study. 

Could this study be right for you?
  • Must have at least one biological child
  • Is/was one of the primary non-gestational caregivers (fathers) of that child
  • Speaks English as a first language
Age Range
18 - 65 years

Neurodevelopmental Effects of Youth Tackle Football

Official Title
Understanding the Neurodevelopmental Effects of Youth Tackle Football Participation
Purpose

In this study we are aiming to identify risk factors for higher exposure to football-related neurotrauma in youth tackle football players and to determine the effects of football-related neurotrauma exposure on neurodevelopment in children with no previous tackle football participation.

For this specific posting, we are looking for boys ages 8-12 who are non-athletes or athletes who play non-contact sports to serve as control subjects for our fMRI study. 

Could this study be right for you?

We are looking for boys ages 8-12 who are either non-athletes or do not participate in any contact sports

  • Boys must have no metal implanted in the body
  • Have no prior history of head trauma
  • Have no serious health or mental health diagnoses
  • Must not have a fear of enclosed spaces
Age Range
8 - 12 years

Exploring the Development of the Infant and Fetal Brain

Official Title
Exploring the Connectivity and Functional Organization of the Infant Brain
Purpose

The purpose of the study is to investigate how the brain that we are each born with leads to our own unique behavior later in life, and the similarities and differences between maternal and child brains. We are studying infants prenatally and postnatally, following up with them as they grow and develop, and studying their mothers to understand how similar/different they are to their child.

Could this study be right for you?
  • Infants under 3 years of age, and pregnant persons who are at least 20 weeks pregnant
  • All participants must have no metal implanted in the body
  • Have no significant health conditions or history of serious mental illness
  • Not suffer froma (fear of enclosed spaces)
  • Pregnancies must be without complication.
Age Range
Up to 40 years

Determining the Best Glasses Prescription for Children with Down Syndrome

Official Title
Dilated Wavefront versus Non-Dilated Wavefront for Metric-Optimized Refraction Procedure for Individuals with Down Syndrome
Purpose

The purpose of this study is to examine whether we can use an instrument that measures how the eye focuses light to determine the best glasses prescription.

Could this study be right for you?
  • Children with Down syndrome age 5 to 17 years
  • Able to do vision tests by naming or matching shapes or letters
  • Able to look at lights for short periods of time
  • No nystagmus (uncontrolled eye movements when trying to look at things)
  • Safe to dilate the eyes - we will screen medical history, eye health, and allergies to determine this
  • No scars on the front of the eye
  • No cataracts
  • No eye diseases like glaucoma or retinal problems
Age Range
5 - 17 years

A Study about Retirement from Contact Sports after Concussion

Official Title
Retirement from contact sports after concussion
Purpose

The purpose of this study is to learn about the experiences of children and young adults after they stop playing contact sports due to concussion.

Could this study be right for you?
  • Male and females aged 14-22 years old
  • Retired from contact sports due to prior concussion

Additionally, a parent may participate if their child enrolls. 

Age Range
14 - 22 years

A Study about Retirement from Contact Sports after Concussion

Official Title
Retirement from Contact Sports after Concussion
Purpose

The purpose of this study is to understand the experiences of children and young adults after medical retirement from contact sports due to concussion(s).

Participants and their parent(s) will complete online questionnaires (about 10 minutes) at the time of enrollment. You will then be scheduled for an interview (about 30 minutes) by video meeting or phone.

Could this study be right for you?
  • Children and young adults who have retired from contact sports or other high-risk activities (i.e. dirt bike riding, downhill skiing...) due to prior concussion.  
  • Parents may participate if their child enrolls.
Age Range
14 - 22 years

A Study about Movement Videos to Identify Developmental Abnormalities in Infants

Official Title
The 5000 Baby Project
Purpose

The purpose of this study is to develop a screening tool to be used at birth to help lower the age at diagnosis of various developmental disorders. 

Your infant will lie on their back in their diaper and have a video recorded of their movements. You will be given a medical history questionnaire to fill out during the recording. The visit typically lasts 15-20 minutes.

Could this study be right for you?
  • Any infants from birth - 6 months (corrected age if applicable) 
  • Parent/legal guardian present and willing to provide informed consent
  • Parent/Legal guardian is English Speaking

Ohio Teen Driver Study

Official Title
Leveraging DRVN driver training app to reduce risky driving intentions in novice teen drivers
Purpose

The purpose of this study is to see if the bonus safety messages and the amount of app use predicts safe driving attitudes and behaviors at licensure. We are recruiting Ohio teens with learner's permits to use a free driver training app called DRVN. 

Could this study be right for you?
  • Must have learner's permit to drive in Ohio
Age Range
15 - 17

A Study about Eye Teaming, Focusing Ability and Quality of Life

Official Title
Development of Patient-Reported Outcome Measures for Children with Concussion-Related and Non-Concussion-Related Non-Strabismic Binocular Vision, Accommodative and Visual Tracking Problems: Phase 1
Purpose

The purpose of this study is to assist in development of a new quality of life survey that can be used to learn more about how eye teaming, focusing ability and eye movement problems affect a child’s life.

Could this study be right for you?
  • Children experiencing eye teaming, focusing, and eye movement problems (with recent concussion or non-concussed)
  • Children with amblyopia (lazy eye) are excluded
Age Range
8 - 17 years