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Here are the studies that match your search criteria. If you are interested in participating, please reach out to the contact listed for the study. If no contact is listed, contact us and we'll help you find the right person.

404 Study Matches

Study to Evaluate the Efficacy (Effect on Disease) and Safety of Finerenone on Morbidity (Events Indicating Disease Worsening) and Mortality (Death Rate) in Participants With Heart Failure and Left Ventricular Ejection Fraction (Proportion of Blood Expelled Per Heart Stroke) Greater or Equal to 40% (FINEARTS-HF) (FINEARTS-HF)

The purpose of this study is to look at how well finerenone, a new drug works in participants with heart failure, to learn if the new drug is safe for participants and how it affects the body. Heart failure is a syndrome with symptoms e.g. shortness of breath (dyspnea) and signs of fluid retention, e.g. in the lungs (pulmonary edema) or excess fluid in other parts of the body (edema e.g. swollen ankles). Finerenone is taken as a tablet once daily and will be compared to a "placebo". A placebo looks like the study drug but does not have any medicine in it.

Tamas Alexy
40 years and over
This study is NOT accepting healthy volunteers
STUDY00010807
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Inclusion Criteria:

• at least 40 years old
• diagnosis of heart failure with New York Heart Association(NYHA) class II-IV, or hospitalized primarily for heart failure
• on a diuretic medication for at least 30 days
• left ventricular ejection fraction (LVEF) of at least 40% measured any way in the last 12 months
Exclusion Criteria:

• Myocardial infarction, coronary artery bypass (CABG), stroke or transient ischemic attack (TIA) in the last 90 days
• systolic blood pressure (SBP) 160 mmHg or greater if not on treatment with at least 3 blood pressure lowering medications or 180 mmHg or greater irrespective of treatments
• additional criteria apply (study staff will review)
Heart & Vascular
Clinics and Surgery Center (CSC), Heart Failure
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See this study on ClinicalTrials.gov

ALX-HPP-501: An Observational,Longitudinal Prospective, Long-term Registry of Patients with Hypophosphatasia

This is a long-term registry is designed to collect data on hypophosphatasia (HPP) to better understand the condition and learn more about the disease, how patients feel about living with HPP and effect of HPP on the patients wellbeing and health. The study will look at participant’s medical records and health questionnaires about the health status of patients. This study collects observational data from clinical care and does not involve any treatment for HPP or administration of medication for HPP.

Kyriakie Sarafoglou
Not specified
This study is NOT accepting healthy volunteers
STUDY00004936
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Inclusion Criteria:

• confirmed diagnosis of HPP.
• documented alkaline phosphatase (ALP) activity below the lower limit of normal for age and sex, or a documented ALPL gene mutation.
• able to read and speak English
Exclusion Criteria:

• currently participating in an Alexion-sponsored clinical trial
Rare Diseases
HPP, Hypophosphatasia
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See this study on ClinicalTrials.gov

Characterization of spleen motion and anatomy using imaging and sensors

This research is being performed to examine how the spleen moves during breathing in various body positions and breathing conditions. Physical measurements of the participant's body will be recorded (weight, height, and body dimensions) and then noninvasive recordings of the spleen and breathing patterns will be recorded. The spleen motion will be measured using standard abdominal ultrasound imaging, and breathing will be measured with accelerometers (small devices about the size of a quarter that measure the movement of the chest during breathing).

Hubert Lim
18 years and over
This study is also accepting healthy volunteers
STUDY00013252
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Inclusion Criteria:

• at least 18 years old
Exclusion Criteria:

• individuals who have had a splenectomy
• people with breathing difficulties and/or individuals for whom short breath holds and modification of breathing patterns is difficult or uncomfortable
• unable to maintain five body positions: sitting, sitting with a 45 degree recline, laying on back (supine), laying on right side, and laying face down (prone) comfortably and independently
• unable to speak and read English
Digestive & Liver Health
Imaging, Spleen
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Stress Response and Opioid Dysfunction in Nicotine Dependence

This study includes healthy adults between 18-70 years old who are either non-smokers or cigarette smokers interested in quitting. The purpose of this study is to learn more about how people respond to stress and to taking one dose of a widely and safely used drug called naltrexone as well as to learn about how these responses relate to whether or not someone smokes, smoking cessation, and smoking relapse.

Mustafa al'Absi
18 years and over
This study is NOT accepting healthy volunteers
STUDY00008687
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Inclusion Criteria:

• Live in Minnesota.
• Between 18-70 years old.
• Generally healthy.
• Want to quit using tobacco and nicotine.
• Are willing to attend up to 11 online (videoconference) study visits over a period of approximately 4 months (though you may be asked to complete the last visits over a period of up to 1 year).
Exclusion Criteria:

• Do not live in Minnesota.
• Not between 18-70 years old.
• Not willing to attend to up to 11 online (videoconference) study visits over a period of approximately 4 months.
Heart & Vascular, Mental Health & Addiction, Prevention & Wellness
cigarette, nicotine, quit smoking, smoker, smoking, smoking cessation, stress, tobacco
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Prospective quantitative kinematic assessment of patients with normal pressure hydrocephalus

This is a prospective study aimed at quantifying walking and balance in normal pressure hydrocephalus (NPH) patients in the clinical setting. To accomplish this, we will use a portable motion capture system that is widely used to study biomechanics in humans. Once quantified, we want to test the effects of ventriculoperitoneal shunt (VPS) on walking and balance among NPH patients. Thus, our objectives are: Aim 1: We will demonstrate the use of quantitative kinematic data on NPH patients pre-lumbar drain, post-lumbar drain and post-VPS in order to assess the predictive value of CSF removal on gait and balance. Aim 2: We will demonstrate the use of objective, neuropsychological data on NPH patients pre-lumbar drain, post-lumbar drain and post-VPS in order to assess the predictive value of CSF removal on cognition 3. We will demonstrate the use of objective, physical therapy data on NPH patients pre-lumbar drain, post-lumbar drain and post-VPS in order to assess the predictive value of CSF removal on therapeutic intervention in terms of walking and balance measures.

Robert McGovern, MD
18 years and over
This study is NOT accepting healthy volunteers
STUDY00010297
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Inclusion Criteria:
People who are suspected of having Normal Pressure Hydrocephalus (NPH) and scheduled to have inpatient admission for a trial lumbar drain
Exclusion Criteria:

• People who have dementia of sufficient severity to impair their ability to make health-care decisions
• People who have other types of Parkinson's Disease
• People who are unable to stand without help
Brain & Nervous System
Normal pressure hydrocephalus, Hydrocephalus, Balance, Incontinence, Dementia
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Methodology and Development of Tobacco Related Biomarkers Methodology and Development of Tobacco Related Biomarkers, part of 'Metabolism of Carcinogenic Tobacco-Specific Nitrosamines'

The purpose of this study is to better understand how tobacco and nicotine products affect our bodies. In this observational study smokers, vapers, smokeless tobacco users, nicotine replacement product users, non-users, and ex-users will be asked to provide biological samples. We will look for biological “markers” (biomarkers), or chemical changes in the body, that occur due to tobacco or nicotine exposure. Collected samples will be used for the development of biomarkers of toxicant exposure and for assessing exposure between the different groups. The intent is to eventually use these biomarkers to improve detection, prevention, and treatment strategies for tobacco-related diseases. This study will allow us to test currently used biomarkers, and to establish a biorepository (sample bank) to identify and develop new biomarkers associated with tobacco exposure and cessation. The type of samples and amount collected will depend on the specific biomarker(s) being developed or tested. Potential samples include saliva, cheek (buccal) & oral cells, blood, urine, hair, and/or nail clippings.

Stephen Hecht, PhD
18 years and over
This study is also accepting healthy volunteers
0908M70881
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Inclusion Criteria:

• 21 years or older
• Daily user of tobacco or nicotine products
Exclusion Criteria:

• Unstable health condition
• Pregnant or nursing
Cancer, Community Health, Prevention & Wellness
nicotine, nicotine replacement, smokeless tobacco, smoker, smoking, tobacco, vaper, vaping
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Determinants of Renal Structural Responses to Enzyme Replacement Therapy (ERT) in Fabry Disease Study (LDN6702)

The effect of enzyme replacement therapy on how well your kidneys are responding to enzyme replacement therapy (ERT) is not clear from blood and urine tests alone, but may be more clear in comparisons of kidney biopsies performed before and some time after ERT has been initiated, and this is what we are focusing our study efforts on. The purpose of this study is to obtain your permission to allow us to study the kidney biopsy tissues (collected for medical reasons) after the regular routine studies have been completed. Through our special research measurements and additional study, we hope to be able to see and measure very specific changes in the kidney tissues from Fabry patients taking ERT. We also hope that through these studies of what happens within the kidney before and after starting ERT, we are able to reveal valuable information about the importance of factors like your age that you started ERT, the amount or dosage of ERT, and any differences seen between males and females.

Michael Mauer
Not specified
This study is NOT accepting healthy volunteers
1205M14901
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Inclusion Criteria:

• diagnosed with Fabry disease and a clinical decision has been made to obtain a kidney biopsy, a GFR, and urinary albumin studies
• have previously completed clinical trials which included measures of renal function and renal biopsies
Exclusion Criteria:

• serum creatinine more than 2.5 mg/dL
• known to have a renal disease other than Fabry
Kidney, Prostate & Urinary, Rare Diseases
Fabry disease, Kidney disease, Renal disease
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See this study on ClinicalTrials.gov

Muscular Dystrophy Association Neuromuscular Observational Research (MOVR) Data Hub Protocol (#MDACS1)

Multi-Site Registry study

Peter Karachunski
Not specified
This study is NOT accepting healthy volunteers
SITE00000485
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Inclusion Criteria:
Any person who has a diagnosis of ALS, DMD, BMD, SMA, or any other neuromuscular diseases
Exclusion Criteria:
There are no exclusion criteria
Brain & Nervous System
Muscular Dystrophy, Neuromuscular diseases, Muscular Dystrophy Association (MDA)
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A person-centered employment preparation program for adolescents and young adults with autism spectrum disorder and their families

This study includes the development and evaluation of a person-centered employment preparation program for families of transition-aged youth with autism.

Rebekah Hudock
Not specified
This study is NOT accepting healthy volunteers
STUDY00013507
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Inclusion Criteria:

• between the ages of 15-25
• have a medical diagnosis of Autism Spectrum Disorder (ASD) or educational eligibility for special education services under the category of autism
• verbally fluent (can speak in complete sentences and have basic conversation) and speak and understand English
• have access to WiFi and two devices with webcams
• at least one caregiver are able to commit to attending 8 90-minute virtual intervention sessions
Exclusion Criteria:

• do not live in MN
• medical, behavioral, or mental health concerns that make it too difficult to participate in the study or that necessitates a higher level of care
Children's Health, Mental Health & Addiction
ASD, Autism, Autism Spectrum Disorder
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DegenPRO: A multicenter prospective registry for the management of degenerative spine disorders

This is an observational registry database for adult patients diagnosed with degenerative spine disorders, which aims to add information to the understanding of the disease management of this spine diseases. By creating this registry, a more complete picture of degenerative spine disorders - including treatment practices - will be established, by collecting information about the health status of patients across several hospitals in several countries. Research of this kind will help future patients by providing doctors with information about degenerative spine disorders, and about patients' treatment outcomes. Data from this registry may be used to generate descriptive statistics on demographics, and clinical characteristics, including co-morbidities, treatment patterns and adverse outcomes (resulting from treatment or disease), as well as patients' quality of life measurements. Condition: Patients with a degenerative spine disorder Intervention/procedure investigated: No specific treatment required. Study design: Prospective case series

Christopher Martin
18 years and over
STUDY00000102
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Inclusion Criteria:
Patient aged 18 years or older Patient diagnosed with a degenerative spine disorder who receives treatment for the degenerative spine disorder Patient capable of understanding the content of the patient information / Informed Consent Form Patient willing and able to participate in the registry Patient who has agreed to participate in the registry by providing consent according to the applicable local law and the declaration of Helsinki
Exclusion Criteria:
None
Clinics and Surgery Center (CSC)
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See this study on ClinicalTrials.gov

An Open Label Study to Evaluate DPCP Ointment for the Treatment of Alopecia Areata

The purpose of the study is two-fold. First, we will see whether treating alopecia areata with a ointment containing DPCP is safe and causes hair to regrow. Second, we will take blood and scalp biopsy samples and analyze them for biomarkers. The biomarkers in this study are molecules related to DNA that tell us whether certain genes are turned on or off. Those markers may help us predict whether or not patients respond to this type of treatment. The testing for biomarkers will also help us to better understand what causes alopecia areata. This study requires you to make forty-two (42) visits to the study site over a course of approximately four (4) months.

Maria Hordinsky
18 years and over
This study is NOT accepting healthy volunteers
1407M52002
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Inclusion Criteria:

• diagnosis of extensive alopecia areata
• women of childbearing age must agree to use an acceptable, highly effective method of birth control to prevent pregnancy
Exclusion Criteria:

• women who are pregnant or breast feeding
• current controlled or uncontrolled infection of any type
• systemic therapy for cancer within the past five years except for adequately treated Squamous Cell Carcinoma (SCC) or Basal Cell Carcinoma (BCC) of the skin
• additional medical conditions, treatments for alopecia areata, or mental health diagnosis (study staff will review)
Dermatology (Skin, Hair & Nails)
Alopecia Areata
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See this study on ClinicalTrials.gov

Post-operative Sore Throat and Gum Chewing for Long Duration LMA Use

The purpose of this study is to determine if chewing gum immediately prior to transport to the operating room reduces the severity of post-operative sore throat in patients who have an LMA placed for procedures with duration greater than 1 hour.

Jacob Hutchins
18 years and over
This study is NOT accepting healthy volunteers
STUDY00012614
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Inclusion Criteria:

• having outpatient ambulatory surgery
• receiving general anesthesia utilizing a laryngeal mask airway
• surgery expected to last longer than 1 hour
Exclusion Criteria:

• chronic laryngitis
• chronic bronchitis
• asthma
• gastroesophageal reflux disease
• smoked within the last week
• non-English speaking
Breathing, Lung & Sleep Health
Clinics and Surgery Center (CSC), Anesthesia, Surgery
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See this study on ClinicalTrials.gov

Optimization of deep brain stimulation parameters in patients with medically refractory epilepsy

This study will develop a platform for stimulation setting optimization based on power spectral density (PSD) measures. Randomized, controlled trials have demonstrated that stimulation of the anterior nucleus of the thalamus (ANT) suppresses seizures. The central hypothesis tested here will be that PSD measured in the ANT will correlate with seizure frequency and stimulation settings that suppress broadband activity will result in lower seizure rates.

Robert McGovern, MD
18 years and over
This study is NOT accepting healthy volunteers
STUDY00011863
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Inclusion Criteria:
People who have medically refractory epilepsy with a deep brain stimulator in place
Exclusion Criteria:
People who have dementia of sufficient severity to impair their ability to make healthcare related decisions for themselves
Brain & Nervous System
Epilepsy, DBS, Deep Brain Stimulation
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Improving Diagnosis and Treatment in Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT)

This is a multi-center, prospective, observational cohort registry study looking at kids and their relatives with Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT).

Bradley Clark
Not specified
This study is NOT accepting healthy volunteers
STUDY00011733
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Inclusion Criteria:

• anyone diagnosed with CPVT before 19 years of age.
Exclusion Criteria:

• significant medical history that isn't related to CPVT
Rare Diseases, Heart & Vascular
CPVT, arrhythmia, ventricular tachycardia
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Mechanisms of Rigidity Enhancement with an Activation Maneuver in Parkinson's Disease

This study will investigate neural mechanisms underlying the enhancement of rigidity with an activation maneuver (contralateral voluntary movement such as hand tapping) in people with Parkinson's disease. Rigidity will be measured using a custom robotic manipulandum while neural activity will be assessed using EEG and TMS protocols.

Colum MacKinnon
18 years and over
This study is also accepting healthy volunteers
STUDY00004525
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Inclusion Criteria:

• Diagnosis of idiopathic PD as determined by a movement disorders neurologist
• 21 to 80 years old. Healthy participants must be 18 to 80 years old.
Exclusion Criteria:

• Diagnosis of dementia
• Significant arm tremor or very limited arm movement
• History of other neurological disorders
• Pregnancy
Brain & Nervous System
Parkinson's Disease, Neurology
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Neuroplasticity of the motor system in people with idiopathic REM sleep behavior disorder

The purpose of this project is to evaluate motor system neuroplasticity and brain structure and function in people with Rapid Eye movement (REM) sleep behavior disorder (RBD) and healthy control participants. Our general hypothesis is that people with idiopathic REM sleep behavior disorder (RBD) will show abnormalities in motor cortical plasticity and alterations in structural and function connectivity that are consistent with changes observed in early Parkinson’s disease (PD).

Colum MacKinnon
18 years and over
This study is also accepting healthy volunteers
STUDY00005529
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Inclusion Criteria:

• Diagnosis of isolated REM sleep Behavior Disorder (iRBD) confirmed by polysomnogram
• able to walk independently without using an assistive device (cane or walker) for 50 meters
• 21-75 years old
• For Healthy Volunteers: able to walk independently without using an assistive device (cane or walker) for 50 meters and 21-75 years old
Exclusion Criteria:

• diagnosed with dementia
• history of musculoskeletal disorders that significant affect movement of lower or upper limbs
• other significant neurological disorders that may affect participation or performance
• Anti-depressant associated RBD.
Brain & Nervous System
REM sleep Behavior Disorder
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Development of a Non-invasive Approach to Test Cortical-Brainstem Motor Pathways in Humans

The purpose of this project is to develop and test a novel non-invasive brain stimulation protocol, using transcranial magnetic stimulation (TMS), that will allow reliable examination of cortical-brainstem motor pathways in humans.

Colum MacKinnon
18 years and over
This study is also accepting healthy volunteers
STUDY00003381
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Inclusion Criteria:

• Healthy adults: age 21-50 years
• People with diagnosis of hereditary spastic paraplegia:
• age 21-50 years
• able to stand, unassisted, for more than 2 minutes
Exclusion Criteria:

• history of a frequent fainting in response to blood, needles, emotional or sensory triggers
• on anti-coagulant medications
• musculoskeletal disorder that affects the ability to stand
• history of seizures, epilepsy, stroke, multiple sclerosis or traumatic brain injury
• presence of any metal in the brain or implanted pacemaker
• history of surgery on blood vessels, brain or heart
• unexplained, recurring headaches or concussion within the last six months
• moderate to severe hearing impairment
• pregnancy
Brain & Nervous System
Hereditary spastic paraplegia, Transcranial magnetic stimulation (TMS)
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Humanitarian Use Device: Medtronic DBS Therapy for Dystonia (HDE #H020007) (Dystonia IRB)

Humanitarian use devices are medical devices approved by the FDA for the treatment of medical conditions affecting fewer than 4,000 patients per year. The FDA reviewed the safety of the device and determined that the probable health benefits outweigh the risks of injury or illness from its use. Effective treatment of symptoms, however, has not been studied in formal clinical trials. Medtronic DBS Therapy delivers electrical stimulation to areas in the brain to help control symptoms of various movement disorders. You may be a candidate for Medtronic DBS Therapy for Dystonia if you have been diagnosed with chronic, intractable (drug refractory) primary dystonia. You or your third party payer (health insurance, Medicare, Medicaid or other) must provide payment for hospital, office and other medical costs related to this therapy.

Jerrold Vitek
7 years and over
This study is NOT accepting healthy volunteers
1207M17701
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Inclusion Criteria:

• 7 to 99 years old
• diagnosed with chronic, intractable (drug refractory) primary dystonia determined by a neurologist or neurosurgeon
Exclusion Criteria:

• patients who are at significant surgical risk as determined by the neurosurgeon and/or anesthesiologist
• patients who have not had an adequate trial of medical or non-surgical treatment
Brain & Nervous System
DBS, Deep Brain Stimulation, Dystonia
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See this study on ClinicalTrials.gov

Validation of Visual Stimuli for Eating Disorders Research

The goal of this study is to identify food and body images that may cause strong emotional responses among individuals with eating and weight-related concerns. Specifically, the researchers are looking to identify a set of food images and body images that can be used in future research studies to examine differences in emotion-based reactions between individuals with and without eating disorder symptoms. Ultimately, this knowledge may help us better understand food and body-related emotional processes that might contribute to eating disorder attitudes and behaviors.

Lisa M Anderson
18 years and over
This study is also accepting healthy volunteers
STUDY00011639
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Inclusion Criteria:

• At least 18 years old
• Currently have an eating disorder and/or in treatment for eating disorder
• Engage in restrictive eating patterns
• For healthy participants: no diagnosis of eating disorder or restrictive eating patterns
Exclusion Criteria:

• Unable to read English language fluently
Mental Health & Addiction
Eating Disorders, Anorexia Nervosa, Bulimia Nervosa, Restrictive Eating
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The (IRAD) International Registry for Acute Aortic Dissection (CCMOCPAAD)

The International Registry of Aortic Dissection (IRAD) was created in 1996 by cardiovascular specialists committed to expanding current knowledge of aortic dissection with the goal of improving patient outcomes. This registry study uses a standardized form to capture data from consecutive patients with aortic dissection at participating hospitals.

Stephen Huddleston
18 years and over
This study is NOT accepting healthy volunteers
1111M06641
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Inclusion Criteria:

• 18 to 80 years of age
• clinical diagnosis of acute aortic dissection
• Type A dissection
• Type B dissection
• Retrograde type B dissection
Exclusion Criteria:

• Aortic aneurysm
• Myocardial infarction
• Cerebral accident
• Active infection
Heart & Vascular
Aortic Dissection
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See this study on ClinicalTrials.gov

Neural Bases of Disgust Conditioning in Anorexia Nervosa

We are studying the brain patterns of people who have anorexia nervosa and those who don't have anorexia nervosa. We will look at MRIs, behavioral measures, and questionnaires to see if we can identify the brain activity associated with disgust. There will be a follow-up at 6 and 12 months.

Lisa M Anderson
18 years and over
This study is also accepting healthy volunteers
STUDY00009646
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Inclusion Criteria:

• Anorexia Nervosa Participants: females between 18- 50 years old who meet criteria for diagnosis of Anorexia Nervosa
• Healthy Participants: healthy females age between 18-50, no previous diagnosis of Anorexia Nervosa or other psychiatric disease.
Exclusion Criteria:

• Meets criteria for substance abuse disorder or actively suicidal
• Neurological condition or other developmental disorder
• MRI contraindication
• Inability to read English
Mental Health & Addiction
Anorexia, Eating Disorder, Mental Health
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Longitudinal Study of Porphyrias

The objective is to conduct a longitudinal investigation of the natural history, complications, and therapeutic outcomes in people with acute and cutaneous porphyria.

Marshall Mazepa, MD
Not specified
This study is NOT accepting healthy volunteers
SITE00000892
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Inclusion Criteria:

• patient of any age
• diagnosis of a porphyria
• biochemical findings, as documented by laboratory reports of porphyria-specific testing performed after 1980
Exclusion Criteria:

• elevations of porphyrins in urine, plasma or erythrocytes due to other diseases
Rare Diseases
Acute Porphyrias, Cutaneous Porphyrias
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See this study on ClinicalTrials.gov

Corrona Inflammatory Bowel Disease (IBD) Registry

This is a prospective, non-interventional, research study for patients with IBD under the care of a certified gastroenterologist. The primary objective for this registry is to prospectively study the natural history of IBD, the prevalence and incidence of comorbidities, targeted adverse events, and more, via questionnaires.

Eugenia Shmidt
18 years and over
This study is NOT accepting healthy volunteers
STUDY00007736
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Inclusion Criteria:

• at least 18 years old
• Diagnosis of one of the following by a gastroenterologist: Crohn's disease or Ulcerative colitis (UC)
• users of an approved biologic drug or JAK inhibitor (Tofacitinib) for the treatment of UC or Crohn's disease
Exclusion Criteria:

• Participating in or planning to participate in a clinical trial studying new medications for Crohn's disease or Ulcerative colitis
Digestive & Liver Health
Clinics and Surgery Center (CSC), Crohn's disease, Ulcerative colitis
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See this study on ClinicalTrials.gov

Clinical Evaluation of a Novel Neuromuscular Blockade Monitoring System

Michael Todd
18 years and over
This study is NOT accepting healthy volunteers
STUDY00002808
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Inclusion Criteria:

• scheduled to undergo any elective surgical procedure under general anesthesia in the MHealth East Bank operating rooms
• administration of a nondepolarizing neuromuscular blocking drug (rocuronium or cisatracurium) is anticipated
Exclusion Criteria:

• procedure is being done as an emergency
• procedure occurring in the evening or weekend
Brain & Nervous System
Anesthesia
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See this study on ClinicalTrials.gov

A Pilot Trial of UrApp, a Novel Mobile Application for Childhood Nephrotic Syndrome Management

We are studying a new phone app, UrApp, for parents (or caregivers) to use when managing the care of children who have been diagnosed with nephrotic syndrome in the last six weeks. We will look at medication and urine monitoring with two groups; one will use the app, the other will have usual care. Study participation will last for one year.

Michelle Rheault
18 years and over
This study is NOT accepting healthy volunteers
STUDY00006828
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Inclusion Criteria:

• caregivers of children ages 1-17 with steroid sensitive nephrotic syndrome within 4 weeks of starting corticosteroid treatment
• caregivers of children with steroid sensitive nephrotic syndrome diagnosed within 42 days at the time of starting the study
• access to internet or Wi-Fi in the home
• caregiver proficient with the English language
Exclusion Criteria:

• caregivers of children with end-stage kidney disease, renal transplant, or secondary nephrotic syndrome (due to systemic lupus erythematosus)
Kidney, Prostate & Urinary
Idiopathic Nephrotic Syndrome
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See this study on ClinicalTrials.gov

Safety and Acceptability of Patient -administered Sedation During Mechanical Ventilation

This study is comparing the benefits and adverse effects of two delivery methods to help patients relax and decrease anxiety during his/her time on mechanical ventilation. This study is not examining the medication but rather the process of how the patient receives the sedation medication: patient controlled or usual care.

Craig Weinert
18 years and over
This study is NOT accepting healthy volunteers
1605M88241
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Inclusion Criteria:

• receiving mechanical ventilation (ventilator) in the Intensive Care Unit
• receiving medication for sedation or pain
Exclusion Criteria:

• prone (facing down) ventilation being used
• low blood pressure that is being treated with medication
• unstable medical condition (staff will review)
Brain & Nervous System, Respiratory System
ICU, Intensive Care Unit, Pain, Ventilator
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See this study on ClinicalTrials.gov

Focus in NeuroDevelopment (FIND) Network: A Statewide Network for Research in Neurodevelopment

The purpose of this research project is to develop a registry and database of families with neurodevelopmental disorders.

Amy Esler
Not specified
This study is also accepting healthy volunteers
1306M35301
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Inclusion Criteria:

• All ages
• All individuals with disabilities and families within the neurodevelopmental disorder community
• Also looking for clinicians, educators, and professionals in the field
Children's Health, Mental Health & Addiction
autism, OCD, ADHD, tic disorders, neurodevelopment, community outreach
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Frailty Assessment by Edmonton Frail Scale to Predict Outcome in Patients Undergoing Cardiovascular Surgery "Frail Heart" Study

We are looking at measures of frailty (including an assessment questionnaire and other data from the medical record) and the relationship to outcomes from cardiac or vascular surgery. The questionnaire will take about 10 minutes to complete and we will contact you by phone once every three months for one year after your surgery.

Tjorvi Perry
18 years and over
This study is NOT accepting healthy volunteers
STUDY00009831
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Inclusion Criteria:
People who are having any of the following heart surgery procedures:
• thoracic aortic surgery
• coronary artery bypass graft surgery
• Aortic valve replacement
• Mitral valve replacement or repair
• Tricuspid valve replacement or repair
• Pulmonary valve replacement
• Infective endocarditis surgery
• Open and interventional abdominal aortic revascularization
Exclusion Criteria:

• People who have liver cirrhosis
• People who aren't able to make independent health care decisions
Heart & Vascular
Cardiac Surgery, Coronary Artery Bypass, Heart Valve Replacement, Abdominal Aortic Surgery
I'm interested
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Graded Motor Imagery for Women at Risk for Developing Type I CRPS following Distal Radius Fractures

Background: Distal radius fractures (DRF) account for nearly one-fifth of all fractures in older adults, and women experience them 5x as often as men. Most DRF occur with low impact injuries to the wrist with an outstretched hand, and are often managed via closed treatment and cast immobilization. Women sustaining a DRF are at risk for upper limb immobility, sensorimotor changes, edema and type I complex regional pain syndrome (CRPS). Since CRPS onset is likely influenced by alterations in the brain’s somatosensory region, a rehabilitation intervention, Graded Motor Imagery (GMI), aims to restore cortical representation, including sensory and motor function, of the affected limb. To date, there are no studies on the use of GMI in reducing risk of or preventing the onset of type I CRPS in women with DRF treated with cast immobilization. Due to a higher likelihood of women with this injury developing type I CRPS, it is important to early intervention is needed. Methods/Design: This article describes a six-week randomized comparative effectiveness trial, where the outcomes of a modified GMI program (mGMI) + standard of care (SOC) group (n=33) are compared to a SOC only control group (n=33). Immediately following cast immobilization, both groups participate in four 1-hour clinic-based sessions, and a home program for 10 minutes three times daily until cast removal. Blinded assessments occur within 1 week of cast immobilization (baseline), at three weeks post cast immbolization, cast removal, and at three months post cast removal. The primary outcomes are patient reported wrist/hand function and symptomology on the Patient Rated Wristand Hand Evaluation, McGill Pain Questionnaire, and Budapest CRPS Criteria. The secondary outcomes are grip strength, active range of motion as per goniometry, circumferential edema measurements, and joint position sense. Discussion: This study will investigate the early effects of mGMI + SOC hand therapy compared to SOC alone. We intend to investigate whether an intervention, specifically mGMI, used to treat preexisiting pain and motor dysfunction might also be used to mitigate these problems prior to their onset. If positive effects are observed, mGMI + SOC may be considered for incorporation into early rehabilitation program.

Corey McGee, PhD, MS, OTR/L, CHT
18 years and over
This study is NOT accepting healthy volunteers
1701M03721
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Inclusion Criteria:

• age 55 and older
• received closed treatment of distal radius fractures
Exclusion Criteria:

• central nervous system disorders (e.g., Brain injury, Spinal Cord Injury, Parkinson's, Multiple Sclerosis)
• surgical fixation of fracture
• non english speaking
• multiple fractures to the same arm
• conditions of the opposite upper limb which would result in painful and markedly limited active hand, wrist and forearm motion
• cognitive disorders which make it difficult to follow testing commands and home program participation
• significant visual impairment
Bone, Joint & Muscle
Musculoskeletal Pain, Clinics and Surgery Center (CSC), Closed, Complex Regional Pain Syndromes, Distal Radius Fracture, Fractures
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Synergistic Enteral Regimen for Treatment of the Gangliosidoses (SYNER-G) (Syner-G)

The Syner-G regimen research study seeks to evaluate the use of a combination of a medication called miglustat and a ketogenic diet for treatment of the gangliosidoses to learn if this combination will provide improved clinical outcomes compared to what we currently know about the natural course of the disease.

Jeanine Jarnes
Up to 18 years old
This study is NOT accepting healthy volunteers
1311M46101
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Inclusion Criteria:

• no more than 17 years old
• documented infantile or juvenile gangliosidosis disease
Exclusion Criteria:

• severe kidney disease
• females who are pregnant or breast feeding
• females who are post puberty who are unwilling to use highly effective birth control
Rare Diseases
GM1 Gangliosidoses, GM2 Gangliosidoses, Sandhoff Disease, Tay-Sachs Disease
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See this study on ClinicalTrials.gov