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Conditions: Hereditary Angioedema
Interventions: Donidalorsen; Drug
Lead sponsor: Ionis Pharmaceuticals, Inc.; Industry
Eligibility: 12 Years and older
Enrollment: 154 participants
Healthy volunteers: Healthy volunteers not accepted
Timeline: 2022 – 2027
U.S. locations: 16
States / cities: Paradise Valley, Arizona • La Jolla, California • Santa Monica, California + 13 more

Conditions: brca1 Mutation Carrier, brca2 Mutation Carrier, Breast Cancer
Interventions: DNA analysis, mutation analysis, polymorphism analysis, laboratory biomarker analysis, evaluation of cancer risk factors; Genetic · Other · Procedure
Lead sponsor: Gynecologic Oncology Group; Network
Eligibility: 18 Years to 80 Years · Female only
Enrollment: 10,000 participants
Healthy volunteers: Healthy volunteers not accepted
Timeline: Started 2008
U.S. locations: 1
States / cities: Bethesda, Maryland

Conditions: Non-Transfusion Dependent Beta-Thalassemia (NTDT)
Interventions: REGN7999, Placebo; Drug
Lead sponsor: Regeneron Pharmaceuticals; Industry
Eligibility: 18 Years to 65 Years
Enrollment: 19 participants
Healthy volunteers: Healthy volunteers not accepted
Timeline: 2024 – 2026
U.S. locations: 1
States / cities: New York, New York

Conditions: Congenital Ichthyosis
Interventions: Isotretinoin, Vehicle; Drug · Other
Lead sponsor: LEO Pharma; Industry
Eligibility: 9 Years and older
Enrollment: 34 participants
Healthy volunteers: Healthy volunteers not accepted
Timeline: 2019 – 2021
U.S. locations: 8
States / cities: Phoenix, Arizona • Palo Alto, California • New Haven, Connecticut + 5 more

Conditions: Breast Cancer, Ovarian Cancer, Pancreatic Cancer, Metastatic Prostate Cancer
Interventions: Standard Genetic Counseling, Educational Video; Behavioral
Lead sponsor: Dana-Farber Cancer Institute; Other
Eligibility: 18 Years and older
Enrollment: 269 participants
Healthy volunteers: Accepts healthy volunteers
Timeline: 2020 – 2023
U.S. locations: 6
States / cities: Boston, Massachusetts • Brighton, Massachusetts • Milford, Massachusetts + 3 more

Conditions: Malignant Neoplasm
Interventions: ponatinib hydrochloride, laboratory biomarker analysis; Drug · Other
Lead sponsor: Sameek Roychowdhury; Other
Eligibility: 18 Years and older
Enrollment: 22 participants
Healthy volunteers: Healthy volunteers not accepted
Timeline: 2015 – 2022
U.S. locations: 2
States / cities: Ann Arbor, Michigan • Columbus, Ohio

Conditions: Atopic Dermatitis
Interventions: Placebo for Upadacitinib, Upadacitinib; Drug
Lead sponsor: AbbVie; Industry
Eligibility: 12 Years to 75 Years
Enrollment: 912 participants
Healthy volunteers: Healthy volunteers not accepted
Timeline: 2018 – 2025
U.S. locations: 58
States / cities: Phoenix, Arizona • Scottsdale, Arizona • Bakersfield, California + 50 more

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

Conditions: Skin Laxity
Interventions: Ulthera Treatment at EL2, Ulthera Treatment at EL4; Device
Lead sponsor: Ulthera, Inc; Industry
Eligibility: 30 Years to 65 Years
Enrollment: 42 participants
Healthy volunteers: Accepts healthy volunteers
Timeline: 2014 – 2016
U.S. locations: 3
States / cities: Beverly Hills, California • Saratoga, California • Wilmington, North Carolina

Conditions: Atopic Dermatitis
Interventions: bleach bath (sodium hypochlorite); Drug
Lead sponsor: University of Rochester; Other
Eligibility: 18 Years to 65 Years
Enrollment: 58 participants
Healthy volunteers: Healthy volunteers not accepted
Timeline: 2014 – 2017
U.S. locations: 1
States / cities: Rochester, New York

Conditions: Systemic Lupus Erythematosus, Sjogren's Syndrome, Inflammatory Myositis, Psoriatic Arthritis, Gout, Ankylosing Spondylitis, Arthritis of Multiple Sites Associated With Inflammatory Bowel Disease (Diagnosis), Osteoarthritis
Interventions: mRNA COVD19 vaccine; Biological
Lead sponsor: Mayo Clinic; Other
Eligibility: 18 Years and older
Enrollment: 58 participants
Healthy volunteers: Healthy volunteers not accepted
Timeline: 2021 – 2022
U.S. locations: 1
States / cities: Rochester, Minnesota

Conditions: Mucopolysaccharidosis VII, MPS VII, MPS 7, Sly Syndrome
Interventions: No Intervention; Other
Lead sponsor: Ultragenyx Pharmaceutical Inc; Industry
Eligibility: Not listed
Enrollment: 50 participants
Healthy volunteers: Healthy volunteers not accepted
Timeline: 2018 – 2032
U.S. locations: 7
States / cities: Orange, California • Washington D.C., District of Columbia • Chicago, Illinois + 4 more

Conditions: Atopic Dermatitis
Interventions: Oregano extract cream, Hydrocortisone; Drug
Lead sponsor: Rutgers, The State University of New Jersey; Other
Eligibility: 2 Years to 17 Years
Enrollment: 1 participant
Healthy volunteers: Healthy volunteers not accepted
Timeline: 2014 – 2017
U.S. locations: 1
States / cities: Somerset, New Jersey

Conditions: Atopic Dermatitis
Interventions: 0416, Vehicle of 0416 test product, tacrolimus ointment 0.1%; Drug
Lead sponsor: Fougera Pharmaceuticals Inc.; Industry
Eligibility: 18 Years and older
Enrollment: 793 participants
Healthy volunteers: Healthy volunteers not accepted
Timeline: 2008 – 2009
U.S. locations: 1
States / cities: Melville, New York

Conditions: Inherited Metabolic Diseases, Lysosomal Storage Disorders, Peroxisomal Storage Diseases, Inborn Errors of Metabolism, Mucopolysaccharidosis
Interventions: ALD-101; Biological
Lead sponsor: Aldagen; Industry
Eligibility: Up to 16 Years
Enrollment: 40 participants
Healthy volunteers: Healthy volunteers not accepted
Timeline: 2008 – 2011
U.S. locations: 3
States / cities: Los Angeles, California • New York, New York • Durham, North Carolina

Conditions: Lynch Syndrome, FAP, Hereditary Diffuse Gastric Cancer, Juvenile Polyposis Syndrome, Peutz-Jeghers Syndrome
Interventions: Research Registry; Other
Lead sponsor: University of Pittsburgh; Other
Eligibility: 8 Years to 100 Years
Enrollment: 114 participants
Healthy volunteers: Healthy volunteers not accepted
Timeline: 2012 – 2018
U.S. locations: 1
States / cities: Pittsburgh, Pennsylvania

Conditions: Atopic Dermatitis, Vitamin D Deficiency, Asthma
Interventions: Not listed
Lead sponsor: Medical College of Wisconsin; Other
Eligibility: 1 Year to 18 Years
Enrollment: 98 participants
Healthy volunteers: Healthy volunteers not accepted
Timeline: 2010 – 2013
U.S. locations: 1
States / cities: Milwaukee, Wisconsin

Conditions: Sly Syndrome, MPS VII, Mucopolysaccharidosis, Mucopolysaccharidosis VII
Interventions: UX003; Drug
Lead sponsor: Ultragenyx Pharmaceutical Inc; Industry
Eligibility: 5 Years and older
Enrollment: 12 participants
Healthy volunteers: Healthy volunteers not accepted
Timeline: 2015 – 2019
U.S. locations: 4
States / cities: Oakland, California • Orange, California • Minneapolis, Minnesota + 1 more

Conditions: Atopic Dermatitis
Interventions: Oral Probiotics; Drug
Lead sponsor: University of California, Los Angeles; Other
Eligibility: 6 Months to 3 Years
Healthy volunteers: Accepts healthy volunteers
Timeline: 2007 – 2008
U.S. locations: 1
States / cities: Los Angeles, California

Conditions: Systemic Lupus Erythematosus
Interventions: atorvastatin; Drug
Lead sponsor: The Center for Rheumatic Disease, Allergy, & Immunology; Other
Eligibility: 18 Years to 60 Years · Female only
Enrollment: 15 participants
Healthy volunteers: Healthy volunteers not accepted
Timeline: 2007 – 2008
U.S. locations: 1
States / cities: Kansas City, Missouri

Conditions: Alopecia, Androgenetic
Interventions: Puregraft System, Celution System, Kerastem Therapy, Liposuction; Device · Procedure
Lead sponsor: Kerastem Technologies, LLC; Industry
Eligibility: 18 Years and older
Enrollment: 71 participants
Healthy volunteers: Healthy volunteers not accepted
Timeline: 2015 – 2018
U.S. locations: 4
States / cities: Los Angeles, California • Miami, Florida • Highland Park, New Jersey + 1 more

Conditions: Radiation Induced Fibrosis
Interventions: Losartan 25 milligram capsule, Placebo; Drug
Lead sponsor: Shaw Cancer Center; Other
Eligibility: 18 Years and older · Female only
Enrollment: 43 participants
Healthy volunteers: Healthy volunteers not accepted
Timeline: 2023 – 2027
U.S. locations: 1
States / cities: Edwards, Colorado

Conditions: Atopic Dermatitis
Interventions: Dupilumab, Placebo; Drug
Lead sponsor: Sanofi; Industry
Eligibility: 18 Years and older
Enrollment: 188 participants
Healthy volunteers: Healthy volunteers not accepted
Timeline: 2019 – 2021
U.S. locations: 8
States / cities: North Little Rock, Arkansas • Redwood City, California • Rolling Hills Estates, California + 5 more

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

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A Study to Assess the Long-Term Safety and Efficacy of Donidalorsen in the Prophylactic Treatment of Hereditary Angioedema (HAE)

Studying Breast Cancer Risk in Women Who Are BRCA1/BRCA2 Mutation Carriers

A Study to Test the Safety, Tolerability, and Efficacy of an Antibody, REGN7999, Injected Under the Skin for the Treatment of Iron Overload in Adult Participants With Non-Transfusion Dependent β-thalassemia, Using MRI Scans to Measure Iron Levels in the Body

A Vehicle Controlled Study to Evaluate Safety and Efficacy of Topical TMB-001 for Treatment of Congenital Ichthyosis

Genetic Testing for Breast, Ovarian, Pancreatic, and Prostate Cancers

Ponatinib for Patients Whose Advanced Solid Tumor Cancer Has Activating Mutations Involving the Following Genes: FGFR1, FGFR2, FGFR3, FGFR4, RET, KIT.

Evaluation of Upadacitinib in Adolescent and Adult Patients With Moderate to Severe Atopic Dermatitis (Eczema)

Single-Session "Empowered Relief" Class for Marfan Syndrome and Related Conditions

Ultherapy® for Treating the Face and Neck Using Standard Versus Simulines Transducers

Bleach Bath Treatment of Adults With Atopic Dermatitis

COVID-19 Vaccination in Rheumatic Disease Patients

Mucopolysaccharidosis VII Disease Monitoring Program

Oregano Ointment vs. Standard Treatment for Pediatric Atopic Dermatitis

Study of 0416 Ointment in the Treatment of Atopic Dermatitis

ALD-101 Adjuvant Therapy of Unrelated Umbilical Cord Blood Transfusion (UCBT) in Patients With Inherited Metabolic Diseases

Hereditary Colorectal and Associated Tumor Registry Study

Asthma, Missed Immunizations, and Vitamin D Deficiency in Atopic Dermatitis

A Study of UX003 Recombinant Human Beta-Glucuronidase (rhGUS) Enzyme Replacement Therapy in Subjects With Mucopolysaccharidosis Type 7, Sly Syndrome (MPS 7)

The Effects of Probiotics in Atopic Dermatitis

Statins and Lupus: Effects of Statins on Clinical Lupus Parameters, Serological Markers and Toll-like Receptors

STYLE -- A Trial of Cell Enriched Adipose For Androgenetic Alopecia

Losartan to Reduce Radiation Induced Fibrosis in Breast Cancer Patients

SAR231893-LPS15497- "Dupilumab Effect on Sleep in AD Patients"

Palliative Care Needs of Children With Rare Diseases and Their Families