Registries & Studies

There are 160 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 Tobacco Cessation (

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 (
Find currently open studies registered with National Institutes of Health.

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 (

Arginase Deficiency (
Comprehensive list of research studies related to congenital heart disease; National Institutes of Health.

Argininosuccinic Aciduria (
Comprehensive list of research studies related to argininosuccinic aciduria; National Institutes of Health.

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 (

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 (

Brain Injuries in Children (
Listing of clinical trials related to brain injuries in children.

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 (

CP Registry

CP Research Trials (

CPAP Clinical Trials
This website provides a list of current studies involving CPAP.

Celiac disease studies (

Childhood Absence Epilepsy (

Childhood Hearing Loss (

Childhood absence epilepsy, initial treatment trial (

Childhood and Adolescent Migraine Prevention Study (CHAMP) (
Ages 8-17, 34-week study, paid, comparing two medicines--amitriptyline and topiramate--with a placebo. Only one participant so far; need 16 total. May end study for lack of participants. Study being conducted at the University of Utah Clinical Neurosciences Center.

Children and Adolescents with MPS I (

Children with Tourette Syndrome (
Lists numerous studies focusing on children with TS, includes etiology, manifestations, and treatment studies.

Clinical Studies of POTS (
Comprehensive list of studies registered with the National Institutes of Health.

Clinical Trials Related to 22q11.2 Deletion Syndrome (

Clinical Trials Related to Galactosemia (

Clinical Trials Related to Hearing Aids in children (
Studies with a search of hearing aids AND children.

Clinical Trials Related to Migraine in Children (

Clinical Trials Vilazodone in Adolescents (

Clinical Trials for Levomilnacipran in Adolescents (

Clinical Trials for Preterm Infants (

Clinical Trials in ADHD (
Trial listings for ADHD with "completed," "recruiting," and "active" status noted.

Clinical Trials in Children with Asthma (
A list of trials registered with the National Institutes of Health; some may be of interest and offer the opportunity to participate in research.

Clinical Trials in Children with Down Syndrome (

Clinical Trials in Congenital Hypothyroidism (
A list of clinical trial maintained by the National Library of Medicine, National Institutes of Health.

Clinical Trials in DMD (
A list of trials registered with the National Institutes of Health; some may be of interest and offer the opportunity to participate in research.

Clinical Trials in Fabry (
List of current clinical trials in Fabry disease; a service of the U.S. National Institutes of Health.

Clinical Trials in Intellectual Disabilities (
Compilation of clinical trials related to Intellectual Disabilities in children; from the National Institutes of Health

Clinical Trials in MMD (
A listing of registries and clinical trials for children with MMD; National Institutes of Health.

Clinical Trials on Tracheostomies (
Lists current studies related to tracheostomy and children; sponsored by the U.S. National Institute of Health.

Clinical Trials/Studies Related to TSC (
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 NF1 (
From the National Institutes of Health, a compilation of clinical trials in NF1 and related conditions.

Clinical trials in SMA

Clinical trials in XXY (Klinefelter) syndrome (

Clinical trials in children and adolescents with GERD (

Clinical trials related to TBI in children (

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

Clinical trials, substance abuse (
Provides a listing of federally and privately supported clinical trials in the U.S. and worldwide. Research studies include new treatments for a variety of conditions affecting CSHCN. Locations, eligibility criteria, and risks vary.

Cochlear Implants and Children (

Congenital Adrenal Hyperplasia (
List of studies related to CAH from the National Library of Medicine.

Congenital Heart Disease, Children (
Comprehensive list of research studies related to congenital heart disease; National Institutes of Health,

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 (

Cystic Fibrosis, Children or Adolescents (

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 (

Description of MOMS trial for NTD (

E-Cigarettes and Youth (

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 (

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 Annual Report 2013 (PDF Document 724 KB)
An abbreviated schedule of assessments and testing for pediatric Fabry patients can be found in Appendix 4 (pg. 12 of the doc / pg. 14 with pdf finder).

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 Information (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 (
An up-to-date list of clinical trials related to FASDs.

Foster Care (

Fragile X (
Listing of current and recent studies related to Fragile X.

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.

Headache Clinical Trials (

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)

Infantile Spasms (

Inflammatory Bowel Disease (
A listing of registries and clinical trials for children with inflammatory bowel disease; National Institutes of Health.

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 (

LCHAD/TFP Deficiency in Children (birth-17 years) (

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 (


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 (

Maple Syrup Urine Disease in Children (

Maternal Depression (
Listing of open trials related to maternal depression.

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 (

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
Begun by the Children's Tumor Foundation, the NF Registry aiming to: • Let people know about new clinical trials (new potential treatments) • Provide patients with facts and figures about the NF community • Learn how NF changes over a person’s lifetime • Help researchers understand what makes one person’s symptoms different from another's • Better inform qualified NF researchers about issues people with NF care about most

NIH search engine for current clinical trials

NIH study of ARPKD/CHF
Description, from, of an NIH study to better understand the medical complications of these disorders and identify characteristics that can help in the design of new treatments.

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.

Osteogenesis Imperfecta Clinical Trials
This NIH website lists current open clinical trials for OI.

Osteoporosis in Children (

Otitis Media with Effusion (

PAP in Children (
An up to date listing of studies in these forms of non-invasive ventilation.

PKU in Children and Adolescents (

Pediatric Constipation (
Comprehensive list of research studies related to pediatric constipation; National Institutes of Health.

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 (
A list of clinical trials that is registered with the National Institutes of Health.

Prader-Willi Syndrome Studies (
List of studies related to PWS; a service of the U.S. National Institutes of Health.

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)
Dietary recommendations; American Academy of Pediatrics, 1995.

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

Propionic Acidemia in Children (

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 (
Lists clinical studies that have an active, recruiting, and completed status; National Institutes of Health.

SPARK for Autism study
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.

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 (

Severe Combined Immunodeficiency (SCID) (

Sickle Cell Disease (

Simulation Training in the Pediatric Tracheostomy and Home Ventilator Population
The study investigates the use of a highly-realistic simulation program that will allow caregivers opportunities to manage critical situations as it pertains to a medically complex child dependent on tracheostomy with or without home ventilation. Eligible caregivers are those caring for a child with a tracheostomy being discharged from the NICU/PICU for the first time. Sponsor: Medical College of Wisconsin. Identifier: NCT04308109

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 (

Smoking cessation, general (

Spina Bifida (
A list of trials registered with the National Institutes of Health that may offer an opportunity to participate in research.

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

Spinal Muscular Atrophy (

Stroke scale study (NIH) (Children's Hospital of Philadelphia)
This study evaluates the reliability and predictive utility of a version of the National Institutes of Health (NIH) Stroke Scale that has been modified for use with children. Information collected through use of this Pediatric NIH Stroke Scale (PedNIHSS) will be reviewed in the context of magnetic resonance imaging (MRI) scans of the brain at the start of a child’s stroke and again one week later. Researchers are looking for information that will help to predicting brain recovery and return of function in children who have suffered strokes, in order to develop a more complete understanding of the process of healing. From the study's website.

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 (
A current list of clinical trials (active, recruiting, and recently completed) of autism and related conditions.

Studies of Complementary & Alternative Medicine (
A current list of studies of CAM therapies and utilization registered with

Studies of Galactosemia (
Current listings of registered studies of galactosemia; sponsored by the National Institutes of Health.

Studies of Integrative Health in Children and Adolescents (
Actively recruiting studies that you may be able to participate in and information about completed studies.

Study of economic impact of celiac disease (Rush University)

Syncope in children and adolescents (

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 (
Ages 7-18, a 12-week study wearing lenses with a coating to minimize light. No medications involved. Study conducted through the University of Utah's Clinical Neurosciences Center.

Toolkit for individuals with Intellectual Disabilities, their families and caregivers
The series, “Appropriate Use of Psychotropic Medications for People with IDD: Helping Individuals Get the Best Behavioral Health Care.” Online health training in 8 brief modules. For people supporting adults with intellectual and developmental disabilities to engage more effectively with health care providers and strengthen the health care relationship. Created by Vanderbilt Kennedy Center in partnership with Tennessee's Department of Intellectual and Developmental Disabilities and Medicaid agency, TennCare.

Transgender Youth (

Treatment of CMV-related hearing loss (

Trials info (SCI info pages)

Tuberous Sclerosis (
A list of trials registered with the National Institutes of Health; some may be of interest and might offer opportunity to participate in research.

Turner Syndrome, Children (

Tyrosinemia Type 1 (
A list of clinical trials related to tyrosinemia type 1 that is registered with the National Institutes of Health.

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

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) (

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.