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Showing 1–24 of 178 matching trials from the live ClinicalTrials.gov search.
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Conditions
Chronic Pain, Marfan Syndrome, Vascular Ehlers-Danlos Syndrome, Loeys-Dietz Syndrome
Interventions
Empowered Relief
Behavioral
Lead sponsor
Stanford University
Other
Eligibility
18 Years and older
Enrollment
92 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2024
U.S. locations
1
States / cities
Palo Alto, California
Enrolling by invitation Not applicable Interventional Accepts healthy volunteers

Palliative Care Needs of Children With Rare Diseases and Their Families

NCT06938542
Conditions
Trisomy 13 Syndrome, Arthrogryposis Congenita Multiplex With Intestinal Atresia, Asparagine Synthetase Deficiency, CHARGE Syndrome, Early Infantile Epileptic Encephalopathy, FOXG1 Syndrome, KBG Syndrome, Noonan Syndrome, Severe Hemophilia A, Short Bowel Syndrome, Beta-Propeller Protein-Associated Neurodegeneration, Brain Injury of Prematurity With Periventricular Leukomalacia, Chromosome 17p13.3 Microdeletion Syndrome, Chromosome 1q43-1q44 Deletion, Cockayne Syndrome, Congenital Diaphragmatic Hernia, End-Stage Renal Disease With Cloacal Anomaly, Mitochondrial Depletion Disorder, Severe Factor VII Deficiency
Interventions
Family Centered pediatric palliative care for family caregivers of children with rare diseases.
Behavioral
Lead sponsor
Children's National Research Institute
Other
Eligibility
12 Months to 99 Years
Enrollment
480 participants
Healthy volunteers
Accepts healthy volunteers
Timeline
2025 – 2029
U.S. locations
1
States / cities
Washington D.C., District of Columbia
Conditions
Velopharyngeal Insufficiency, Velopharyngeal Incompetence Due to Cleft Palate, Inadequate Velopharyngeal Closure, Palatopharyngeal Incompetence, Hypernasality
Interventions
Expiratory Muscle Strength Training, Maintenance Training
Device
Lead sponsor
Noel Jabbour
Other
Eligibility
5 Years to 17 Years
Enrollment
30 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2025 – 2027
U.S. locations
1
States / cities
Pittsburgh, Pennsylvania
Terminated Not applicable Interventional Accepts healthy volunteers Results available

Neurodevelopmental Outcomes in Craniosynostosis Repair

NCT04072783
Conditions
Craniosynostoses
Interventions
MRI,DTI, functional MRI
Diagnostic Test
Lead sponsor
University of Arkansas
Other
Eligibility
Up to 4 Years
Enrollment
9 participants
Healthy volunteers
Accepts healthy volunteers
Timeline
2021 – 2024
U.S. locations
1
States / cities
Little Rock, Arkansas
Conditions
Brain Malformation, Neuronal Migration Disorder, Cognition Disorder, Epilepsy
Interventions
Not listed
Lead sponsor
Harvard University Faculty of Medicine
Other
Eligibility
Not listed
Enrollment
3,500 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
1996 – 2030
U.S. locations
1
States / cities
Boston, Massachusetts
Recruiting No phase listed Observational Accepts healthy volunteers

RASopathy Biorepository

NCT04395495
Conditions
RAS Mutation, Neurofibromatosis 1, Noonan Syndrome, Noonan Syndrome With Multiple Lentigines, Noonan Neurofibromatosis Syndrome, Cardiofaciocutaneous Syndrome, Costello Syndrome, Legius Syndrome, Smith-Kingsmore Syndrome, MTOR Gene Mutation, GATOR-1 Gene Mutation, SYNGAP1-Related Intellectual Disability, DLG4, MAPK1 Gene Mutation
Interventions
Not listed
Lead sponsor
Children's Hospital Medical Center, Cincinnati
Other
Eligibility
Not listed
Enrollment
1,000 participants
Healthy volunteers
Accepts healthy volunteers
Timeline
2017 – 2065
U.S. locations
1
States / cities
Cincinnati, Ohio
Conditions
Craniofacial Abnormalities
Interventions
SMART-3RP
Behavioral
Lead sponsor
Massachusetts General Hospital
Other
Eligibility
14 Years and older
Healthy volunteers
Accepts healthy volunteers
Timeline
2015 – 2016
U.S. locations
1
States / cities
Boston, Massachusetts
Conditions
UC (Urothelial Cancer)
Interventions
pemigatinib
Drug
Lead sponsor
Incyte Corporation
Industry
Eligibility
18 Years and older
Enrollment
263 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2017 – 2022
U.S. locations
34
States / cities
Tucson, Arizona • San Diego, California • San Francisco, California + 31 more
Completed Not applicable Interventional Accepts healthy volunteers Results available

Premie Pouch to Manage Deformational Plagiocephaly in Very Low Birth Weight Infants

NCT03184441
Conditions
Plagiocephaly
Interventions
Premie Pouch
Device
Lead sponsor
Boston Children's Hospital
Other
Eligibility
Up to 40 Days
Enrollment
11 participants
Healthy volunteers
Accepts healthy volunteers
Timeline
2016 – 2019
U.S. locations
3
States / cities
Boston, Massachusetts • Brighton, Massachusetts • Weymouth, Massachusetts
Conditions
Epilepsy; Seizure, Neuromuscular Diseases, Brain Malformation, Intellectual Disability, Autism Spectrum Disorder, Hypotonia, Inborn Errors of Metabolism, Movement Disorders, Genetic Disease, Development Delay, Chromosome Abnormality, Hearing Loss, Dysmorphic Features, Skeletal Dysplasia, Congenital Abnormality, Microcephaly, Macrocephaly
Interventions
Pre-visit prep, usual care + exome seq
Behavioral · Diagnostic Test
Lead sponsor
University of North Carolina, Chapel Hill
Other
Eligibility
0 Years and older
Enrollment
548 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2018 – 2024
U.S. locations
3
States / cities
Asheville, North Carolina • Chapel Hill, North Carolina • Greenville, North Carolina
Conditions
Noonan Syndrome
Interventions
Vosoritide Injection
Drug
Lead sponsor
BioMarin Pharmaceutical
Industry
Eligibility
3 Years to 11 Years
Enrollment
30 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2024 – 2041
U.S. locations
22
States / cities
Los Angeles, California • Orange, California • Aurora, Colorado + 19 more
Conditions
Solid Tumor
Interventions
RMC-4630, Cobimetinib, Drug: Osimertinib
Drug
Lead sponsor
Revolution Medicines, Inc.
Industry
Eligibility
18 Years and older
Enrollment
113 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2019 – 2022
U.S. locations
21
States / cities
Scottsdale, Arizona • Duarte, California • Orange, California + 18 more
Conditions
DiGeorge Syndrome, Hypoparathyroidism, Complete DiGeorge Syndrome
Interventions
Thymus/Parathyroid Transplantation
Biological
Lead sponsor
Sumitomo Pharma Switzerland GmbH
Industry
Eligibility
Up to 24 Months
Enrollment
25 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2005 – 2019
U.S. locations
1
States / cities
Durham, North Carolina
Conditions
22q11.2 Deletion Syndrome
Interventions
NFC-1
Drug
Lead sponsor
Aevi Genomic Medicine, LLC, a Cerecor company
Industry
Eligibility
12 Years to 17 Years
Enrollment
2 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2016 – 2017
U.S. locations
1
States / cities
Philadelphia, Pennsylvania
Conditions
Gastric Adenocarcinoma
Interventions
Derazantinib, Derazantinib-paclitaxel-ramucirumab combination
Drug
Lead sponsor
Basilea Pharmaceutica
Industry
Eligibility
18 Years and older
Enrollment
47 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2020 – 2022
U.S. locations
2
States / cities
Orlando, Florida • New York, New York
Conditions
Urothelial Cancer, Receptors, Fibroblast Growth Factor
Interventions
Archival Tumor Tissue Sample
Other
Lead sponsor
Janssen Research & Development, LLC
Industry
Eligibility
18 Years and older
Enrollment
3,679 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2019 – 2022
U.S. locations
23
States / cities
Tucson, Arizona • Denver, Colorado • Newark, Delaware + 20 more
Conditions
Epilepsy, Focal Cortical Dysplasia, Tuberous Sclerosis, Hemimegalencephaly, Polymicrogyria, Rasmussen Encephalitis, Sturge-Weber Syndrome, Gliosis, Stroke, Tumor, Brain
Interventions
Intra-operative brain tonometry
Device
Lead sponsor
University of California, Los Angeles
Other
Eligibility
Not listed
Healthy volunteers
Healthy volunteers not accepted
Timeline
2018 – 2023
U.S. locations
1
States / cities
Los Angeles, California
Conditions
Subglottic Stenosis (SGS), Pierre Robin Sequence (PRS), Micrognathia, Normal Controls From CT Scans of the Upper Airway
Interventions
Not listed
Lead sponsor
University of North Carolina, Chapel Hill
Other
Eligibility
Up to 17 Years
Enrollment
39 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2011 – 2015
U.S. locations
1
States / cities
Chapel Hill, North Carolina
Conditions
Common Variable Immunodeficiency (CVID), Primary Immune Regulatory Disorder, Immune Dysregulation, DiGeorge Syndrome, STAT 1 Gain of Function, STAT 3 Gain of Function, Hypomorphic RAG1 Deficiency, CD40 Ligand Deficiency, Mendelian Susceptibility to Mycobacterial Disease, GATA2 Associated Immunodeficiency, CD40 Deficiency, Hypomorphic RAG2 Deficiency, Immune Dysregulation Polyendocrinopathy Enteropathy X-Linked Syndrome, Omenn Syndrome, Chronic Granulomatous Disease
Interventions
Hematopoietic stem cell transplant (HSCT)
Biological
Lead sponsor
Paul Szabolcs
Other
Eligibility
5 Years to 40 Years
Enrollment
25 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2026 – 2031
U.S. locations
1
States / cities
Pittsburgh, Pennsylvania
Completed No phase listed Observational Accepts healthy volunteers Results available

Brain Characteristics Noted Prior to and Following Treatment

NCT02392195
Conditions
Nonsynostotic Plagiocephaly
Interventions
Non-interventional
Other
Lead sponsor
Boston Children's Hospital
Other
Eligibility
Up to 8 Months
Enrollment
10 participants
Healthy volunteers
Accepts healthy volunteers
Timeline
2013 – 2020
U.S. locations
1
States / cities
Boston, Massachusetts
Conditions
Costello Syndrome, Noonan Syndrome, Cardiofaciocutaneous Syndrome, Legius Syndrome, Capillary Arteriovenous Malformation Syndrome, RASopathy
Interventions
Not listed
Lead sponsor
National Cancer Institute (NCI)
NIH
Eligibility
1 Month to 99 Years
Enrollment
500 participants
Healthy volunteers
Accepts healthy volunteers
Timeline
2022 – 2035
U.S. locations
2
States / cities
Bethesda, Maryland • Rockville, Maryland
Conditions
Turner Syndrome, Short Stature Homeobox Gene Mutation, Idiopathic Short Stature, Small for Gestational Age at Delivery
Interventions
Lonapegsomatropin [SKYTROFA®], Somatropin Pen Injector
Combination Product
Lead sponsor
Ascendis Pharma A/S
Industry
Eligibility
2 Years to 17 Years
Enrollment
186 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2025 – 2029
U.S. locations
17
States / cities
Palo Alto, California • Sacramento, California • Aurora, Colorado + 13 more
Conditions
Metastatic Urothelial Carcinoma, Unresectable Urothelial Carcinoma
Interventions
Pemigatinib, Pembrolizumab, Gemcitabine, Carboplatin
Drug
Lead sponsor
Incyte Corporation
Industry
Eligibility
18 Years and older
Enrollment
7 participants
Healthy volunteers
Healthy volunteers not accepted
Timeline
2020 – 2021
U.S. locations
13
States / cities
Greenbrae, California • Newark, Delaware • Marietta, Georgia + 10 more
Completed No phase listed Observational Accepts healthy volunteers

Characterization of Cleft Lip and Palate Conditions in Guatemala

NCT04725370
Conditions
Cleft Lip, Cleft Palate, Cleft Lip and Palate
Interventions
NA - survey instrument
Other
Lead sponsor
Children's Hospital of Philadelphia
Other
Eligibility
0 Years to 18 Years
Enrollment
629 participants
Healthy volunteers
Accepts healthy volunteers
Timeline
2017 – 2020
U.S. locations
1
States / cities
Philadelphia, Pennsylvania