Registries & Studies

There are 167 Registries and Studies resources.

Addiction Medications for Adolescents (NIDA)
A research-based guide with information about various medication treatments for substance use disorders; National Institute on Drug Abuse.

Adolescent Weight Control Registry (WCDRC)
Registry for adolescents; Weight Control and Diabetes Research Center.

Alcoholism clinical trials (NIAAA)
National Institute on Alcohol Abuse and Alcoholism conducts various alcoholism research studies at the NIH campus in Bethesda, Maryland. While participating in medical research, you will receive standard treatment for alcoholism, which includes motivational and cognitive behavior therapies; individual, group and family counseling; and an option of attending self-help groups such as AA and more.

Angelman Collaborative Research Partnership
Newsletter from the Angelman Syndrome Foundation notes two studies, one related to identifying biomarkers that could be used to assess the effects of drugs on AS and the other evaluating measures and technologies related to problems areas such as sleep, communication, and brain activity.

Angelman Syndrome Foundation Contact Registry
Sponsored by the Angelman Syndrome Foundation, the registry asks for contact and demographic data for individuals with Angelman syndrome and their families so they can: notify potential participants about Angelman research trials and alert families about recent events and research findings.

Angelman Syndrome Studies (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Angelman, Rett, and Prader-Willi Syndromes Research Consortium
An integrated group of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting clinical research in genetic and neurodevelopmental disorders and maintaining a Patient Contact Registry.

Anxiety in Children (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Arginase Deficiency (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Argininosuccinic Aciduria (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Asthma Research (ALA)
Current research projects funded by the American Lung Association. Emphasis on understanding the immune system’s role in asthma, the effect of mold on severe asthma, improving treatment of severe asthma in children, and studying genes and their role in controlling the immune response.

Auditory Brainstem Implants in Children and Adolescents (ClinicalTrial.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Australian study - CP and genetics
This study is currently in the recruitment phase to examine the genetic contributions to CP with 2500 control families and 2500 families of a child with CP to be included.

Biotinidase Deficiency in Children and Adolescents (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Brain Injuries in Children (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

CHOP maternal fetal surgery for myelomeningocele
CHOP is one of the US centers that is part of the MOMS trial for maternal fetal surgery for myelomeningocele.

CP Clinical Trials (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

CP Registry

CP Research Trials (CenterWatch)

CPAP Clinical Trials
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Celiac Disease in Children (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Childhood Absence Epilepsy (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Childhood Hearing Loss (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Childhood absence epilepsy, initial treatment trial (Clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Childhood and Adolescent Migraine Prevention Study (CHAMP) (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Children and Adolescents with MPS I (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Children with Tourette Syndrome (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical Studies of POTS (clincaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical Trials Related to 22q11.2 Deletion Syndrome (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical Trials Related to Hearing Aids in children (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical Trials Related to Migraine in Children (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical Trials Vilazodone in Adolescents (clinicaltrials.com)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical Trials for Levomilnacipran in Adolescents (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical Trials for Preterm Infants (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical Trials in ADHD (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical Trials in BH4/Tetrahydrobiopterin (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical Trials in Charcot-Marie-Tooth (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical Trials in Children with Asthma (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical Trials in Children with Down Syndrome (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical Trials in Congenital Hypothyroidism (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical Trials in DMD (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical Trials in Fabry (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical Trials in Intellectual Disabilities (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical Trials in MMD (clincialtrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical Trials in NF1 (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical Trials in Pompe Disease (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical Trials in SCHAD (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical Trials on Tracheostomies (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical Trials related to hyperphagia in Prader-Will (ClinicalTrials.gov)

Clinical Trials/Studies Related to TSC (TSAlliance.org)
A list compiled and maintained by the Tuberous Sclerosis Alliance with clinical trials and clinical studies that have obtained Institutional Review Board approval.

Clinical trial information (CF Foundation)

Clinical trials in SMA

Clinical trials in XXY (Klinefelter) syndrome (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical trials in children and adolescents with GERD (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical trials related to TBI in children (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Clinical trials, substance abuse (National Institute on Drug Abuse)

Clinical trials, substance abuse (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

ClinicalTrials.gov
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Cochlear Implants and Children (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Congenital Adrenal Hyperplasia (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Congenital Heart Disease, Children (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Cortical visual impairment (American Association for Pediatric Ophthalmology and Strabismus)
Information about cortical visual impairment (CVI) for parents and educators from the American Association for Pediatric Ophthalmology and Strabismus.

Critical Congenital Heart Disease (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Cystic Fibrosis, Children or Adolescents (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

DS-Connect: The Down Syndrome Registry (NIH)
This site offers patients and families opportunities to connect with researchers and health care providers, and access research data. Patients and families can take confidential health-related surveys and express interest in participating in clinical studies on Down syndrome. Developed by the Down Syndrome Consortium, led by the National Institutes of Health and involving several Down syndrome advocacy and professional organizations.

Depression in Children and Adolescents (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Description of MOMS trial for NTD (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

E-Cigarettes and Youth (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Early Developmental Intervention Programmes Post-Hospital Discharge to Prevent Motor and Cognitive Impairments in Preterm Infants
A review of 22 trials supports early developmental intervention programs post discharge from hospital for preterm infants to improve cognitive development in the short to medium term (up to pre-school age).

Effect of sex chromosomes on brain development (NIMH)
This study hopes to determine whether brain-imaging studies of children with sex chromosome variations will help uncover core biological features of these chromosomal conditions; National Institute of Mental Health.

Epilepsy (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

FRAXA Research Foundation
Along with funding research, FRAXA runs scientific meetings, advises pharmaceutical companies, and provides education. Families can reach out to FRAXA for resources, guidance, referrals, and an international community of support.

Fabry Registry (Genzyme)
Any person with a confirmed diagnosis of Fabry disease is eligible to participate regardless of disease type, treatment status, or treatment choice.

Fabry Registry Recommended Schedule of Assessments (PDF Document 258 KB)
A recommended schedule of assessments and testing for Fabry patients; from Gensyme, a Sanofi company; 2015

Family-Centered Care Self-Assessment Tool
Provides an opportunity for reflection and quality improvement activities related to family-centered care, for families and for healthcare providers to assess care for all children and youth, and also has some questions that are specific to the needs of children and youth with special health care needs and their families. Developed by Family Voices

Fenobam (FRAXA Research Foundation)
Although in the early stages, fenobam, a selective mGluR5 antagonist, may be helpful in individuals with fragile X syndrome. So far, it has been tested only in adults.

Fetal Alcohol Spectrum Disorders and Children (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Foster Care (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Fragile X (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Fragile X Research Registry
A database of people who want to be notified about fragile X research studies. It is a free, confidential, convenient way for families to connect with studies and move research forward.

Global Angelman Syndrome Registry
The Registry aims to collect data on individuals with Angelman syndrome (AS) through a series of online surveys to build the largest and most comprehensive global collection of information on AS to date; supported by AS foundations in over 20 countries.

Global Leukodystrophy Initiative
A shared research infrastructure supports collection and analysis of robust clinical data and biological specimen to pave the way for transformative therapeutic trials across the leukodystrophies.

Headache Clinical Trials (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

I-CAH Registry
The International Congenital Adrenal Hyperplasia Registry, funded by the United Kingdom Medical Research Council, was developed to support research and improvement in clinical care of patients with congenital adrenal hyperplasia.

IRSF medication trials
International Rett Syndrome Foundation membership required to view this information.

Implementing an Intervention to Address Social Determinants of Health in Pediatric Practices (PROSWECARE)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Infantile Spasms (Clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Inflammatory Bowel Disease (clincialtrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Integrated Guidelines for Cardiovascular Health and Risk Reduction in Children and Adolescents (NHLBI)
Integrated guidelines for Cardiovascular Health and Risk Reduction in Children and Adolescents; National Heart, Lung, and Blood Institute.

Ketogenic Diet Trial (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

LCHAD/TFP Deficiency in Children (birth-17 years) (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Laboratory Guidelines for Turner Syndrome (ACMG)
Provides information on appropriate prenatal and postnatal diagnostic cytogenetic studies for Turner syndrome; American College of Medical Genetics and Genomics.

Leukodystrophy (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

MCADD (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

MPS I Registry
An ongoing, observational database that tracks natural history and outcomes of patients with MPS I. The Registry was initiated worldwide in April 2003 as an international observational program sponsored by BioMarin/Genzyme LLC and administered by Genzyme Corporation. Registration is voluntary, free, and confidential.

Malonic Aciduria (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Maple Syrup Urine Disease in Children (ClinicaTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Maternal Depression (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Mental Health Clinical Trials (NIMH)
Links to descriptions of clinical trials related to numerous mental health conditions, including ADHD, anxiety, and depression; National Institute of Mental Health.

Methylmalonic Acidemia in Children (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Millon Adolescent Clinical Inventory (MACI)
The MACI inventory supplements the Millon Adolescent Personality Inventory (MAPI) in that it was developed specifically for use in clinical, residential, and correctional settings. It is useful primarily in the evaluation of troubled adolescents, and may be used for diagnostic assistance, in formulating treatment plans, and as an outcome measure; fee-based.

Minnesota Multiphasic Personality Inventory®-Adolescent (MMPI®-A)
Assessment with 478 True-False items for age 14-18 years old; fee based.

Myotonic Dystrophy Foundation Family Registry (PatientCrossroads)
Connects patients to researchers and allows patients to compare their symptoms with those of other patients.

NF Registry (Children's Tumor Foundation)
The NF Registry is for all types of NF (including NF1, NF2, and schwannomatosis). It is open to all populations, including any age, race, ethnicity, or gender. Information in the NF Registry is used only for communicating with you about updates and clinical trials that match your needs and providing qualified researchers a summary of anonymous patient data about NF symptoms.

NIH study of ARPKD/CHF
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

National Alliance on Mental Illness, Research Page
This page provides useful information about the pros and cons on participating in research studies, how to protect ones rights as a participant

National Fragile X Foundation – FORWARD Registry & Database
A patient and family registry plus a longitudinal database populated by clinician- and parent-reported data from individuals living with FXS.

National Institute of Mental Health Current Clinical Trials - Depression

National Registry of Myotonic Dystrophy Patients (University of Rochester)
Accelerates research in myotonic dystrophy and FSH dystrophy by connecting patients with researchers, collecting longitudinal data to track disease progression, and disseminating information to families, researchers, and care providers.

Open/Aftercare Treatment for Participants Diagnosed With Obsessive Compulsive Disorder - Full Text View - ClinicalTrials.gov

Osteogenesis Imperfecta Clinical Trials
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Osteoporosis in Children (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Otitis Media with Effusion (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

PAP in Children (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

PKU in Children and Adolescents (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Patient-specific, Effective, and Rational Functional Connectivity Targeting for DBS in OCD - Full Text View - ClinicalTrials.gov

Pediatric Constipation (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Pediatric Developmental Screening Flowchart (PDF Document 734 KB)

Pediatric Evaluation of Disability Inventory (PEDI)
Helps evaluate functional disabilities of children ages 6 months to 7 years old; completion time of 45-60 minutes; manual scoring; purchase required.

Pediatric Obesity (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Prader-Willi Syndrome Studies (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Predicting Treatment Response in Patients With OCD - Full Text View - ClinicalTrials.gov

Prescription Drug Monitoring Programs (NASCSA)
Electronic databases which collect, maintain and disseminate controlled substance prescription information specific to each jurisdiction's laws and regulations; National Association of State Controlled Substances Authorities.

Prevention of Pediatric Overweight and Obesity (AAP)
Policy and summary regarding health supervision recommendations; American Academy of Pediatrics.

Propionic Acidemia in Children (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Rare Diseases Clinical Research Network Registry
A place for patients with rare diseases, such as Rett syndrome, MECP2 Duplication, and Rett-Related Disorders Consortium, can register and be contacted about clinical research opportunities and updates on the progress of research projects. The registry is anonymous and free of charge.

Research Studies in CdLS (CdLS Foundation)

Research in DMD (Parent Project Muscular Dystrophy)
Listing and explanation of clinical trials for DMD.

Rett Syndrome (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

SPARK National Autism Study
Studies genetic, behavioral, and medical information from hundreds of thousands of people to advance research and discovery in autism. Information is gathered online and participants mail in a saliva sample for genetic testing. The results are provided to the participant. Funded and led by the Simons Foundation.

SPARK study - Utah
Part of a multi-site national study on the causes of autism. Open to individuals with autism and their family members. Information is gathered online and participants mail in a saliva sample for genetic testing, the results of which are provided to the participant. Funded and led by the Simons Foundation.

Seizures (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Severe Combined Immunodeficiency (SCID) (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Sickle Cell Disease (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Simulation Training in the Pediatric Tracheostomy and Home Ventilator Population
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Skin & Soft Tissue Infection in Pediatric Patient Over 3 Months (Intermountain Healthcare) (PDF Document 460 KB)
A clinical algorithm for treating pediatric purulent and non-purulent skin and soft tissue infections. Although potentially useful regardless of location, note that the algorithm is based on Utah and regional antibiotic resistance patterns.

Sleep Apnea in Children (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Smoking cessation, general (Clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Spina Bifida (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Spinal Cord Injuries Clinical Trials (CenterWatch)
Lists trials by state.

Spinal Muscular Atrophy (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Students with Chronic Illnesses: Guidance for Families, Schools, and Students (NHLBI)
Two-page guidance sheet presenting positive actions schools and families can take to address multiple chronic diseases. Facilitates compliance with applicable Federal laws; National Heart, Lung, and Blood Institute.

Studies Related to Autism (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Studies of Complementary & Alternative Medicine (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Studies of Galactosemia (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Studies of Integrative Health in Children and Adolescents (clinicaltrial.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Studies of Pyruvate Decarboxylase Deficiency (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Study of economic impact of celiac disease (Rush University)

Syncope in children and adolescents (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

The Adverse Childhood Experiences Study (CDC)
One of the largest investigations ever conducted to assess associations between childhood maltreatment and later-life health and well-being; Centers for Disease Control and Prevention.

The Drooling Impact Scale (PDF Document 100 KB)
A 10-question assessment tool to gauge the severity and impact of drooling in children.

Thin Film Spectacle Coatings to Reduce Light Sensitivity and Headaches in Child and Adolescent Patients with Migraine (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Transgender Youth (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Treatment of CMV-related hearing loss (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

TrialNet

Trials info (SCI info pages)

Tuberous Sclerosis (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Turner Syndrome, Children (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Tyrosinemia Type 1 (clinicaltrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

UCSF maternal fetal surgery for myelomeningocele
UCSF is one of the centers participating in the MOMS trial for maternal-fetal surgery for myelomeningocele

Understanding How Ketamine Brings About Rapid Improvement in OCD - Full Text View - ClinicalTrials.gov

University of Utah/Primary Children’s Leukodystrophy Studies
Established in 2004, the pediatric leukodystrophy center has cared for and treated hundreds of children and adults with leukodystrophies from all over the country and internationally.

Urea Cycle Disorders Consortium (Rare Diseases Network)
A consortium bringing together researchers and patients for clinical trials.

Utah Autism and Developmental Disabilities Monitoring
The Utah Autism and Developmental Disabilities Monitoring (UT-ADDM) Project collects information about the number of individuals in Utah who have autism spectrum disorders (ASDs) and other developmental disabilities (DDs). Changes in ASD prevalence are studied in specific places and populations over time.

Very Long Chain Acyl-CoA Dehydrogenase Deficiency (birth-17 years) (ClinicalTrials.gov)
Studies looking at better understanding, diagnosing, and treating this condition; from the National Library of Medicine.

Vital signs at different ages (Emedicine)

Yale Child Study Center Autism Research Studies
The Yale Child Study Center is recruiting patients for multiple autism-related studies.