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Registries & Studies
There are 40 Registries and Studies resources.
ADHD Clinical Trials Database (NIMH)
Angelman, Rett and Prader Willi Syndromes Research Consortium
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.
Brain Injuries in Children (clinicaltrials.gov)
a listing of clinical trials related to brain injuries in children, from ClinicalTrials.gov
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.
CPAP Clinical Trials
This website provides a list of current studies involving CPAP.
Characteristics of Prader-Willi Syndrome and Early-Onset Morbid Obesity
A natural history study that will collect long-term data on individuals with PWS and EMO in order to gain a better understanding of the natural progression of the conditions.
Clinical trial - 22q11.2 deletion syndrome (NIH)
Individuals 18-50 with 22q11.2 deletion syndrome are being enrolled in a study to investigate psychiatric problems sometimes noted in individuals with this syndrome.
Clinical trials in DMD (clinicaltrials.gov)
A list of current clinical trials in Duchenne muscular dystrophy compiled by ClinicalTrials.gov.
ClinicalTrials.gov
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.
Current studies of MPS I (ClinicalTrials.gov)
A list of ongoing clinical studies for which patients may be eligible. The list includes registered studies that are closed and may have links to their published outcomes.
Description of MOMS trial for NTD (clinicaltrials.gov)
Fenobam study information (FRAXA)
Although in the early stages, fenobam, a slective mGluR5 antagonist, may be helpful in individuals with fragile X syndrome. So far, it has been tested only in adults.
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.
Mental Retardation (clinicaltrials.gov)
Many clinical trials are underway related to mental retardation. Some may be relevant and of interest to your patients.
NIH list of current clinical trials relating to DEPRESSION
NIH search engine for current clinical trials
NIH study of ARPKD/CHF
Description, from ClinicalTrials.gov, 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 Institutes of Mental Health Current Clinical Trials - DEPRESSION
Ongoing trials infantile spasms (Clinicaltrials.gov)
Osteogenesis Imperfecta Clinical Trials
This NIH website lists current open clinical trials for OI.
Otitis Media with Effusion (NIH Clinical Trials)
a listing of clinical trials related to brain injuries in children, from ClinicalTrials.gov
Research in DMD (PPMD)
A listing and explanation of clinical trials for DMD, from the Parent Project Muscular Dystrophy (PPMD).
Research studies in CdLS (CdLS Foundation)
Rett syndrome clinical trials
This NIH website lists current open clinical trials for girls with Rett syndrome.
Sleep Apnea Clinical Trials
This website lists current studies involving sleep apnea.
Stroke scale study (NIH) (University of Pittsburgh)
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.
Study of economic impact of celiac disease (Rush University)
The 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.
Topiramate clinical trial
A clinical trial assessing the effectiveness of topiramate in preventing skin picking in individuals with PWS.
UCSF maternal fetal surgery for myelomeningocele
UCSF is one of the centers participating in the MOMS trial for maternal-fetal surgery for myelomeningocele
US National Institues of Health Clinical Trial Links for Down Syndrome
United Dystrophinopathy Project
Link to the website for enrollment in the United Dystrophinopathy research project (one of the centers for this study is the University of Utah). Boys with DMD, BMD, and intermediate MD receive genetic testing and periodic strength and functioning assessments. Fee-based genetic testing without enrollment in the research project is also available.
Utah Diabetes Center Pediatric Research Office
For clinical trials (Cat 460) including growth hormone studies, Type 1 Diabetes, and other opportunities, contact the office at 801-587-3927 or 801-587-3973.
XXY syndrome study (Thomas Jefferson University)
Geneticists at Thomas Jefferson University are collecting information to better characterize physical characteristics and learning styles of individuals with XXY syndrome.
Yale Child Study Center Autism Research Projects
The Yale Child Study Center is recruiting patients for multiple autism-related studies.