[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-studies-list:{\"overallStatus\":[\"RECRUITING\",\"AVAILABLE\",\"NOT_YET_RECRUITING\"],\"leadSponsorName\":\"Newcastle University\",\"orderBy\":\"LastUpdateSubmitDate:desc\",\"size\":25,\"offset\":0}":3,"health-study-condition:":273},{"pageToken":4,"total":5,"offset":6,"count":5,"results":7},null,9,0,[8,46,75,103,129,150,183,209,235],{"id":9,"slug":10,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":14,"acronym":4,"eligibilityCriteria":15,"healthyVolunteers":11,"sex":16,"minAge":17,"maxAge":4,"enrollmentInfo":18,"targetDuration":4,"studyType":21,"phases":22,"briefSummary":24,"conditions":25,"keywords":27,"overallStatus":33,"whyStopped":4,"lastUpdateSubmitDate":34,"lastUpdatePostDateStruct":35,"startDateStruct":38,"completionDateStruct":40,"leadSponsor":42,"locationsCount":45},"100595902","patient-engagement-investigation-of-nms-assist-100595902",false,"NCT07038486","Patient Engagement Investigation of NMS Assist","The Impact of a Digital System on the Monitoring and Self-management of Non-motor Symptoms in People With Parkinson's","Inclusion Criteria: Individuals will be eligible if they meet the following inclusion criteria:\n\nAll:\n\n* Age 18 years or over\n* Have compatible smartphone\u002Fdata access (access to a digital device is a necessary prerequisite of system use, and the formative usability study had success in recruiting participants with varying levels of experience with smartphones)\n* Be fluent in English\n* Able and willing to provide informed consent\n* Able and willing to comply with intervention requirements\n\nFor clinically diagnosed people with Parkinson's (PwP) (ICD-10-CM G20):\n\n* Not resident in a care home or nursing home\n* Ambulant\n* Interested in monitoring and managing their NMS\n\nFor CPs:\n\n\\- Be caring for a clinically diagnosed PwP (ICD-10-CM G20) who is participating in the study\n\nExclusion Criteria: Participants will be ineligible for the study if they meet any of the following exclusion criteria:\n\nAll:\n\n* Previous involvement in the development or testing of the digital system\n* In a dependent\u002Funequal relationship with the research or care teams or any PPI representatives\n\nPwP:\n\n* Secondary cause of Parkinsonism\n* Significant cognitive impairment or a diagnosis of Parkinson's disease dementia\n* Significant comorbidity, which, in the opinion of the chief investigator, would preclude safe participation in the study or protocol compliance\n* A life expectancy of \\\u003C6 months\n* Living in residential care facilities","ALL","18 Years",{"count":19,"type":20},30,"ESTIMATED","INTERVENTIONAL",[23],"NA","Parkinson's can cause a wide range of non-motor symptoms (NMS), including pain and problems with mental health, memory and sleep. These affect the quality of life of people with Parkinson's (PwP) and their care partners (CP). If these issues are not recognised and managed quickly, they can result in escalating problems. Many PwP are unsure of the extent and variety of the NMS and how simple adjustments at home could improve them. We have developed a digital system to help PwP monitor their non-motor symptoms and develop skills to self-manage them.\n\nSuch a tool needs to be simple to use, safe and effective. We will ask 30 PwP and CPs to use the digital tool for 6 months, and we will monitor how they use the tool. PwP and CPs will be asked if they feel more knowledgeable and confident to manage their own symptoms whilst being better able to discuss a problem with their healthcare professional.\n\nA smaller group of participants will discuss their experiences in more detail to help pinpoint aspects that work well and those needing adjustment and development.\n\nIt is thought that the use of this system will result in improved quality of life and increased knowledge and confidence for managing symptoms while safely reducing the time spent by healthcare professionals on manageable non-motor symptoms.",[26],"Parkinson Disease",[28,29,30,31,32],"Parkinson disease","Self-management","mhealth","mobile apps","telemedicine","RECRUITING","2026-01-05",{"date":36,"type":37},"2026-01-08","ACTUAL",{"date":39,"type":37},"2025-08-06",{"date":41,"type":20},"2026-12-31",{"name":43,"class":44},"Newcastle University","OTHER",1,{"id":47,"slug":48,"hasResults":11,"nctId":49,"briefTitle":50,"officialTitle":51,"acronym":4,"eligibilityCriteria":52,"healthyVolunteers":53,"sex":16,"minAge":54,"maxAge":55,"enrollmentInfo":56,"targetDuration":4,"studyType":57,"phases":4,"briefSummary":58,"conditions":59,"keywords":61,"overallStatus":66,"whyStopped":4,"lastUpdateSubmitDate":67,"lastUpdatePostDateStruct":68,"startDateStruct":70,"completionDateStruct":72,"leadSponsor":74,"locationsCount":45},"100608813","transient-ischemic-attack-tia-and-spoken-language-100608813","NCT07206433","Transient Ischemic Attack (TIA) and Spoken Language","Identification and Perceptions of Spoken Language Abilities After Transient Ischaemic Attack (TIA): An Exploratory, Longitudinal Study","Inclusion Criteria: People aged 40-85 with a diagnosis of a single carotid circulation TIA.\n\nExclusion Criteria:\n\nYounger than 40 years or older than 85 years of age.\n\nEnglish as a secondary language.\n\nNeurological conditions affecting cognitive function (e.g., Parkinson's disease, dementia, stroke).\n\nSelf-reported, pre-existing speech or cognitive problems, developmental or acquired.\n\nDemonstrate noticeable difficulties carrying out project-related tasks.",true,"40 Years","85 Years",{"count":19,"type":20},"OBSERVATIONAL","Transient Ischaemic Attack (also known as TIA or 'mini-stroke') affects about 46,000 people in the UK each year. It is assumed that people recover fully within 24 hours. However, subtle problems with speaking, and confidence with their communication skills can be long-term. This project will be the first in depth exploration of speaking abilities after recent TIA where there seemed to be a full recovery.\n\nThe researchers will look for 90 volunteers for detailed testing. Thirty people who have had a TIA for the first time. For comparisons, the researchers will also include 60 volunteers without TIA (30 treated to prevent TIA and stroke; 30 who do not receive prevention treatments).\n\nAims and methods:\n\n1. To find out if TIA makes speaking difficult.\n\n   People will complete speaking tasks in a quiet place. For example, people will be asked to tell us about their weekend, what they think about climate change.\n2. To find out if people are concerned about their speech and other thinking skills after TIA.\n\n   People will fill in questionnaires to help us look into these issues.\n3. To find out if speaking abilities and people's own views of their communication change over time (about three months after the TIA).\n\nDiscovering new knowledge about spoken communication after a TIA diagnosis could change the course of TIA research and care across health professions (speech-language therapy, psychology, audiology, neurology). Future studies could use speaking tasks to scrutinise further the complexity of subtle communication problems after TIA and determine which individuals are likely to have these problems. The project will raise understanding of these issues, enabling affected individuals to seek professional support. Finally, it will also guide development of new TIA recommendations and treatments for these problems thus improving people's quality of life.",[60],"TIA (Transient Ischemic Attack)",[62,63,64,65],"TIA","Transient Ischemic Attack","speech","language","NOT_YET_RECRUITING","2025-09-25",{"date":69,"type":37},"2025-10-03",{"date":71,"type":20},"2025-10-01",{"date":73,"type":20},"2027-06-30",{"name":43,"class":44},{"id":76,"slug":77,"hasResults":11,"nctId":78,"briefTitle":79,"officialTitle":80,"acronym":81,"eligibilityCriteria":82,"healthyVolunteers":11,"sex":16,"minAge":17,"maxAge":4,"enrollmentInfo":83,"targetDuration":4,"studyType":21,"phases":85,"briefSummary":86,"conditions":87,"keywords":90,"overallStatus":66,"whyStopped":4,"lastUpdateSubmitDate":95,"lastUpdatePostDateStruct":96,"startDateStruct":98,"completionDateStruct":100,"leadSponsor":102,"locationsCount":4},"100602783","in-this-study-we-are-testing-whether-combining-two-interventions-in-the-early-stages-of-tinnitus-is-more-effective-in-quieting-tinnitus-than-using-one-treatment-alone-in-the-later-stages-of-tinnitus-100602783","NCT07128004","In This Study, we Are Testing Whether Combining Two Interventions, in the Early Stages of Tinnitus, is More Effective in Quieting Tinnitus Than Using One Treatment Alone in the Later Stages of Tinnitus","Effect of Combined Acoustic Ripples and Transcranial Direct Current Stimulation on the Symptoms of New-Onset Subjective Tinnitus","ATtDCS","Inclusion Criteria:\n\n* The presence of tinnitus (persistent sound heard in one or both ears that is not coming from an external sound source or actual sounds being generated inside your body such as turbulent blood flow), which has persisted for at least 3 days, and began within the last 8 weeks. You do not need to be aware of the tinnitus all the time, but it must be persistent in the sense that is can always hear it if you listen out for it, and there is not enough other sounds around to mask it.\n* Age 18 or over\n* The ability to make and communicate an informed choice about whether to take part in the study\n* The ability to sit still and comfortably in a comfortable chair for around 1 hour at a time.\n\nExclusion Criteria:\n\n* Tinnitus due to a physical sound source in the body, such as turbulent blood flow or muscle contractions in the middle ear.\n* Presence of tinnitus over a period of 8 weeks\n* Severe or profound hearing loss at high frequencies in the tinnitus ear(s), such that you could not properly hear the sounds used in the study\n* Any implanted electronic device, such as a pacemaker, cochlear implant, bone-anchored hearing aid, nerve stimulator, deep brain stimulator or spinal cord stimulator\n* Any areas of broken skin on the parts of the scalp where tDCS is applied\n* Ménière's disease\n* Any abnormality of brain structure (e.g. stroke, tumour), or other neurological disorder (e.g. multiple sclerosis or epilepsy)\n* The ongoing use of sedating medications, or certain other nerve- or brain-acting medications\n* A current mental health condition of sufficient severity to prevent certain activities of everyday life\n\nIn addition to these criteria, the researcher might have other reasons to suspect that participation is either contraindicated, or might be unsuitable. In such cases, the researcher should discuss these concerns with the potential participant and\u002For a senior member of the research team. Participation should only proceed if all those involved in these discussions agree it should.\n\n\\-",{"count":84,"type":20},80,[23],"* Tinnitus affects one in seven adults long-term\n* Once present persistently for 4 weeks, tinnitus does not usually disappear\n* People generally become less aware of, and less affected by, their tinnitus over time\n* Only one in six people with tinnitus suffers a long-term negative impact on their life\n* Current treatments can help to reduce the impact of tinnitus, but not silence the sound\n* Treatments have only so far been tested once tinnitus has been present longer than 6 months\n* In this study, the researchers are testing whether combining two interventions, in the early stages of tinnitus, is more effective in quieting tinnitus than using one treatment alone in the later stages of tinnitus\n* One intervention (acoustic ripples) involves playing sounds through headphones for up to 60 minutes per day, and is mostly done in your own time\n* The other intervention (transcranial direct current stimulation: tDCS) involves applying a weak electrical current to the volunteer's scalp using sponges soaked in salt water. This is performed in Newcastle University Medical School for a total of 8 sessions of 40 minutes each, spread over 4 weeks\n* Half the volunteers will receive the 'real' intervention, and half a 'sham' or 'placebo' version. This will be randomly determined, and the volunteers or the research team will not known which you are receiving until the end of the study\n* When the study ends, all volunteers will be able to use the 'real' intervention sounds in their own time, for as long as they wish, if they want to do so. No volunteers will be able to receive tDCS after the end of the study.\n* All volunteers also complete questionnaires about their tinnitus, related symptoms and general health, and have hearing tests plus EEG (electrical brainwave) recordings\n* The study is very low-risk, but does involve a total of 10 visits of around an hour each to Newcastle University Medical School over around a month. These can be arranged flexibly, including daytimes, evenings and weekends\n* The researchers will pay all reasonable travel expenses, and £10 per hour for the volunteer's time in participating\n* The study only completely ends 6 months after the date the tinnitus first started. At this point, the researchers will send some questionnaires to complete only. There is nothing to do for the study in between the tenth visit and this six-month questionnaire.",[88,89],"Tinnitus","Acute",[91,92,93,94],"Acute Tinnitus","Treatment","Sound therapy","tDCS","2025-08-13",{"date":97,"type":37},"2025-08-17",{"date":99,"type":20},"2025-08-05",{"date":101,"type":20},"2027-03-09",{"name":43,"class":44},{"id":104,"slug":105,"hasResults":11,"nctId":106,"briefTitle":107,"officialTitle":108,"acronym":4,"eligibilityCriteria":109,"healthyVolunteers":11,"sex":16,"minAge":110,"maxAge":4,"enrollmentInfo":111,"targetDuration":4,"studyType":21,"phases":113,"briefSummary":114,"conditions":115,"keywords":117,"overallStatus":66,"whyStopped":4,"lastUpdateSubmitDate":121,"lastUpdatePostDateStruct":122,"startDateStruct":124,"completionDateStruct":126,"leadSponsor":128,"locationsCount":4},"100558430","neuromuscular-fatigability-in-individuals-with-heart-failure-100558430","NCT06551012","Neuromuscular Fatigability in Individuals With Heart Failure","The Influence of Active Muscle Mass and Nitrate Supplementation on Fatigability in Individuals With Heart Failure","Inclusion Criteria:\n\n* Patients with a left ventricular ejection fraction \\\u003C 40% who have been diagnosed for at least 3 months.\n* Classified according to New York Heart Association (NYHA) class II-III.\n* Clinically stable and receiving optimal medical treatment.\n* Aged ≥ 45 years old.\n* Ability to read, write and converse in English without the support of an interpreter.\n* Willingness to undertake physical activity with no contraindications to physical activity and capable of performing activities of daily living independently, without the use of a walking aid.\n* Able to provide written informed consent.\n\nExclusion Criteria:\n\n* An electrically implanted device (e.g., pacemaker, left ventricular assist device).\n* Uncontrolled cardiac arrhythmias, myocardial infarction, percutaneous coronary intervention and\u002For bypass graft surgery up to 3 months previously.\n* Receiving antacids or proton pump, xanthine oxidase, or phosphodiesterase inhibitors which affect the reduction of nitrate to nitrite and nitrite to nitric oxide.\n* Treated with organic nitrates (e.g., trinitroglycerin)\n* Major multi-morbidity or other alternative diagnoses of no obvious acute and self-limiting cause (e.g., patients with a terminal diagnosis of cancer, patients in receipt of oxygen therapy or oxygen saturation at rest \\\u003C92%).\n* Obesity (body mass index \\> 30 kg\u002Fm2).\n* Current smoker.\n* Presented with severe symptoms requiring urgent assessment and stabilisation (e.g., breathlessness at rest, hypotension, confusion).\n* Severe physical disability preventing them from functioning independently;\n* Unable to provide informed consent.\n* Currently taking part in any other study.","45 Years",{"count":112,"type":20},28,[23],"Brief summary\n\nThe aims of this project are to 1) characterise muscle fatigue in individuals with chronic heart failure during exercise involving a smaller and larger muscle mass (Part I), 2) to determine the effect of nitrate supplementation on muscle fatigue during large muscle mass exercise in individuals with chronic heart failure (Part II), 3) understand the impact of exercise intolerance on quality of life in individuals with chronic heart failure (Part III). The main questions it aims to answer are:\n\n* Is muscle fatigue attenuated during exercise engaging a smaller vs larger muscle mass in individuals with chronic heart failure owing to lower central cardiopulmonary constraints?\n* Can supplementation with nitrate-rich beetroot juice reduce muscle fatigue and\u002For accelerate post-exercise recovery of muscle function in response to whole body exercise in individuals with heart failure?\n* What impact does exercise intolerance have on the lives of individuals with chronic heart failure?\n\nFor Part I, researchers will compare muscle fatigue during single- and double-leg incremental cycling in individuals with chronic heart failure.\n\nFor Part II, researchers will compare muscle fatigue in individuals with chronic heart failure during double-leg incremental cycling following a period of beetroot juice supplementation containing nitrate, or with a placebo drink consisting of beetroot juice with nitrate extracted.\n\nFor Part III, semi-structured interviews will be conducted to investigate the symptoms associated with performing physical activity and on the impact of exercise intolerance on quality of life in individuals with chronic heart failure.",[116],"Heart Failure With Reduced Ejection Fraction",[118,119,120],"Exercise","Physiology","Fatigability","2025-03-24",{"date":123,"type":37},"2025-03-25",{"date":125,"type":20},"2025-05-01",{"date":127,"type":20},"2027-04-01",{"name":43,"class":44},{"id":130,"slug":131,"hasResults":11,"nctId":132,"briefTitle":133,"officialTitle":134,"acronym":4,"eligibilityCriteria":135,"healthyVolunteers":11,"sex":136,"minAge":17,"maxAge":4,"enrollmentInfo":137,"targetDuration":4,"studyType":57,"phases":4,"briefSummary":139,"conditions":140,"keywords":4,"overallStatus":33,"whyStopped":4,"lastUpdateSubmitDate":142,"lastUpdatePostDateStruct":143,"startDateStruct":145,"completionDateStruct":147,"leadSponsor":149,"locationsCount":45},"100471285","lifestyle-behaviours-of-women-newly-diagnosed-with-heart-failure-100471285","NCT05416879","Lifestyle Behaviours of Women Newly Diagnosed With Heart Failure","Lifestyle Behaviours of Women Newly Diagnosed With Heart Failure: A Quantitative and Qualitative Approach","Inclusion Criteria:\n\n* Adult women with a new diagnosis of heart failure after referral to the RVI Heart Failure Diagnostic Clinic;\n* Able to walk and perform activities of daily living independently;\n* New York Heart Association functional class II-IV;\n* Willingness to undertake physical activity monitoring;\n* Willingness to participate in a semi-structured interview (this is optional and the participant will be able to participate in the study if they choose not to take part in the interview);\n* Ability to read, write and converse in English without the support of an interpreter;\n* Able to provide written informed consent.\n\nExclusion Criteria:\n\n* Male;\n* Already diagnosed with heart failure;\n* Presented with severe symptoms requiring urgent assessment and stabilisation (e.g. breathless at rest, hypotension, confusion);\n* Major co-morbidity or other alternative diagnoses of no obvious acute and self-limiting cause (e.g. malignancy, severe respiratory disease, mental health problem);\n* Severe physical disability preventing them to function independently;\n* Clinically unstable with recent changes in medication;\n* Unable to provide informed consent.","FEMALE",{"count":138,"type":20},40,"Heart Failure occurs when the heart's ability to pump blood is reduced. Heart failure can lead to symptoms of breathlessness, fatigue and ankle swelling, and result in health complications including damage to other organs (e.g. kidneys), reduced function and quality of life. Although the symptoms of heart failure are similar for men and women, there are sex differences. Lifestyle behaviours such as physical activity are important modifiable risk factor for heart failure. Women continue to be underrepresented in heart failure studies and treatment guidelines are male-derived due to these disparities in recruitment. The purpose of the present study is to evaluate the physical activity levels, sedentary behaviour, sleep and quality of life and understand the barriers and facilitators to these lifestyle behaviours in women newly diagnosed with heart failure.",[141],"Heart Failure","2024-12-09",{"date":144,"type":37},"2024-12-10",{"date":146,"type":37},"2022-05-05",{"date":148,"type":20},"2026-06-30",{"name":43,"class":44},{"id":151,"slug":152,"hasResults":11,"nctId":153,"briefTitle":154,"officialTitle":155,"acronym":4,"eligibilityCriteria":156,"healthyVolunteers":11,"sex":16,"minAge":4,"maxAge":4,"enrollmentInfo":157,"targetDuration":4,"studyType":57,"phases":4,"briefSummary":159,"conditions":160,"keywords":163,"overallStatus":33,"whyStopped":4,"lastUpdateSubmitDate":175,"lastUpdatePostDateStruct":176,"startDateStruct":178,"completionDateStruct":180,"leadSponsor":182,"locationsCount":45},"100384966","uk-sma-patient-registry-100384966","NCT04292574","UK SMA Patient Registry","Spinal Muscular Atrophy Patient Registry of the United Kingdom and Ireland","Inclusion Criteria:\n\n* All patients with a confirmed SMA diagnosis (or pending diagnosis) are eligible for inclusion. Diagnosis will be confirmed via genetic testing results\n\nExclusion Criteria:\n\n* There are no exclusion criteria for the registry",{"count":158,"type":20},800,"Spinal muscular atrophy (SMA) is a form of motor neuron disease, most commonly caused by a mutation in the survival motor neuron 1 gene (SMN1) which results in a wide disease spectrum affecting children and adults. It is an autosomal recessive disorder and is therefore caused by inheritance of a mutated gene from each parent. All forms of SMA have an estimated combined incidence of 1 in 6,000 to 1 in 10,000 live births, with a carrier frequency of 1\u002F40 to 1\u002F60.\n\nThe patient registry aims to facilitate a questionnaire-based research study in order to better characterise and understand the disease in the UK and in Ireland. Entry is via self-registration over a secure internet connection (https:\u002F\u002Fwww.sma-registry.org.uk\u002F). Online, patients are asked to read an information sheet about the research project and then indicate their consent to demonstrate willingness to participate. Following online consent, subjects will be entered into the registry. This is an on-going database and all participants are invited to update their information on a biannual basis.",[161,162],"Spinal Muscular Atrophy","SMA",[161,162,164,165,166,167,168,169,170,171,172,173,174],"Neuromuscular Diseases","Motor Neuron Disease","Bulbo-Spinal Atrophy, X-Linked","Kennedy Disease","Spinal Muscular Atrophy with Respiratory Distress 1","Distal Spinal Muscular Atrophy","SMA type 1","SMA type 2","SMA type 3","SMA type 4","5q SMA","2024-07-22",{"date":177,"type":37},"2024-07-23",{"date":179,"type":37},"2008-07-13",{"date":181,"type":20},"2025-05-31",{"name":43,"class":44},{"id":184,"slug":185,"hasResults":11,"nctId":186,"briefTitle":187,"officialTitle":188,"acronym":4,"eligibilityCriteria":189,"healthyVolunteers":11,"sex":16,"minAge":4,"maxAge":4,"enrollmentInfo":190,"targetDuration":192,"studyType":57,"phases":4,"briefSummary":193,"conditions":194,"keywords":196,"overallStatus":33,"whyStopped":4,"lastUpdateSubmitDate":201,"lastUpdatePostDateStruct":202,"startDateStruct":204,"completionDateStruct":206,"leadSponsor":208,"locationsCount":45},"100362621","the-united-kingdom-facioscapulohumeral-muscular-dystrophy-patient-registry-100362621","NCT04001582","The United Kingdom Facioscapulohumeral Muscular Dystrophy Patient Registry","The UK Facioscapulohumeral Muscular Dystrophy Patient Registry","Inclusion Criteria:\n\n\\- All patients with a confirmed FSHD diagnosis (or pending diagnosis) who reside in the UK are eligible for inclusion.\n\nExclusion Criteria:\n\n* Any confirmed NMD other than FSHD\n* Living outside of the UK",{"count":191,"type":20},1018,"99 Years","Facioscapulohumeral Dystrophy (FSHD) is the third most common form of neuromuscular dystrophy worldwide with an estimated prevalence of one in 20,000. FSHD is an autosomal dominant genetic disease and is estimated to affect up to 3,000 people in the UK.\n\nThe patient registry facilitates a questionnaire based research study to better characterise and understand the disease in the UK, and helps to identify potential participants eligible for clinical trials.",[195],"Facioscapulohumeral Muscular Dystrophy",[197,195,198,199,200],"FSHD","Facioscapulohumeral Muscular Dystrophy Type 1","Facioscapulohumeral Muscular Dystrophy Type 2","Muscular Dystrophy","2024-05-07",{"date":203,"type":37},"2024-05-09",{"date":205,"type":37},"2013-05",{"date":207,"type":20},"2040-01",{"name":43,"class":44},{"id":210,"slug":211,"hasResults":11,"nctId":212,"briefTitle":213,"officialTitle":214,"acronym":4,"eligibilityCriteria":215,"healthyVolunteers":11,"sex":16,"minAge":4,"maxAge":4,"enrollmentInfo":216,"targetDuration":218,"studyType":57,"phases":4,"briefSummary":219,"conditions":220,"keywords":222,"overallStatus":33,"whyStopped":4,"lastUpdateSubmitDate":228,"lastUpdatePostDateStruct":229,"startDateStruct":231,"completionDateStruct":232,"leadSponsor":234,"locationsCount":45},"100362758","the-united-kingdom-national-registry-for-myotonic-dystrophy-100362758","NCT04003363","The United Kingdom National Registry for Myotonic Dystrophy","The UK National Registry for Myotonic Dystrophy","Inclusion Criteria:\n\n* All patients with a confirmed Myotonic Dystrophy diagnosis (or pending diagnosis) are eligible for inclusion. Diagnosis will be confirmed via genetic testing results\n\nExclusion Criteria:\n\n* There are no exclusion criteria for the registry",{"count":217,"type":20},900,"20 Years","Myotonic dystrophy (dystrophia myotonica - DM) exists in two forms, usually referred to as DM1 (type 1) and DM2 (type 2). Both conditions are genetic disorders but each affects a different gene. DM1 is the most common adult-onset muscular dystrophy, and is thought to affect at least 1 in 8,000 people worldwide.\n\nThe aim is to facilitate a questionnaire based research study in order to better characterise and understand the disease in the UK. By maintaining a national registry this will help identify potential participants eligible for clinical trials in the future.",[221],"Myotonic Dystrophy",[221,223,224,225,226,227],"Myotonic Dystrophy Type 1","Myotonic Dystrophy Type 2","DM","DM1","DM2","2023-11-28",{"date":230,"type":37},"2023-12-04",{"date":205,"type":37},{"date":233,"type":20},"2030-12",{"name":43,"class":44},{"id":236,"slug":237,"hasResults":11,"nctId":238,"briefTitle":239,"officialTitle":239,"acronym":4,"eligibilityCriteria":240,"healthyVolunteers":11,"sex":16,"minAge":17,"maxAge":241,"enrollmentInfo":242,"targetDuration":244,"studyType":57,"phases":4,"briefSummary":245,"conditions":246,"keywords":259,"overallStatus":33,"whyStopped":4,"lastUpdateSubmitDate":264,"lastUpdatePostDateStruct":265,"startDateStruct":267,"completionDateStruct":269,"leadSponsor":271,"locationsCount":272},"100396456","the-european-nafld-registry-100396456","NCT04442334","The European NAFLD Registry","Inclusion Criteria:\n\n1. Age ≥18 years.\n2. Clinically suspected NAFLD based on any of:\n\n   1. Patient with historical liver biopsy providing histological evidence of NAFLD or,\n   2. Patient undergoing liver biopsy for suspected NAFLD with biochemical and\u002For radiological findings consistent with NAFLD or,\n   3. Patient with radiological evidence of cirrhosis (in absence of an alternative aetiology) plus presence of ≥2 features indicative of the 'metabolic syndrome':\n\n      * Increased waist circumference by ethnically adjusted criteria (e.g. Europid male\u002Ffemale ≥94cm\u002F80cm) or overweight\u002Fobese (BMI ≥25);\n      * Raised fasting glucose ≥100 mg\u002FdL \\[5.6 mmol\u002FL\\], HbA1c ≥48mmol\u002Fmol (6.5%) or previously diagnosed insulin resistance\u002Ftype 2 diabetes mellitus (or on treatment);\n      * Dyslipidaemia (fasting TG level ≥150 mg\u002FdL \\[1.7 mmol\u002FL\\]; or fasting HDL \\\u003C40 mg\u002FdL \\[1.03 mmol\u002FL\\] in males and \\\u003C50 mg\u002FdL \\[1.29 mmol\u002FL\\] in females; or on treatment);\n      * Hypertension (systolic BP ≥130 or diastolic BP ≥85 mmHg, or on treatment).\n3. Average alcohol consumption less than 21\u002F14 units\u002Fweek (males\u002Ffemales) in preceding 6 months and no history of sustained excessive consumption of alcohol in past 5 years.\n\nExclusion Criteria\n\n1. Refusal or inability (lack of capacity) to give informed consent.\n2. Average alcohol ingestion greater than approximately 21\u002F14 units\u002Fweek (males\u002Ffemales) in preceding 6 months or history of sustained excessive consumption of alcohol in past 5 years.\n3. History or presence of Type 1 diabetes mellitus.\n4. Presence of any other form of chronic liver disease except NAFLD.\n5. Recent (within 12 months) or concomitant use of agents known to cause hepatic steatosis (long-term systemic corticosteroids \\[\\>10 days\\], amiodarone, methotrexate, tamoxifen, tetracycline, high dose oestrogens, valproic acid).\n6. Any contra-indication to liver biopsy.\n7. Recent (within 3 months) change in dose\u002Fregimen or introduction of Vitamin E (at a dose ≥400 IU\u002Fday), betaine, s-adenosyl methionine, ursodeoxycholic acid, silymarin or pentoxifylline.\n8. Non-English speaking\u002Funable to access an interpreter. Due to the nature of the study, English language or access to a relevant interpreter is a necessary criterion to ensure lifestyle (diet and exercise) and symptom data are collated.\n9. Patients not meeting inclusion criteria or judged by the investigator to be unsuitable for inclusion in the study.","100 Years",{"count":243,"type":20},10000,"10 Years","The European NAFLD Registry is a prospectively recruited, observational study supporting the study of the clinical phenotype, natural history, disease outcomes and pathophysiology of Non-Alcoholic Fatty Liver Disease and Non-Alcoholic Steatohepatitis. The ultimate goals are to better understand the drivers of interpatient variation in disease pathophysiology and severity and to utilise this information to develop and validate biomarkers that, singly or in combination, enable detection and monitoring of disease progression and\u002For from NAFL through NASH to fibrosis and cirrhosis.",[247,248,249,250,251,252,253,254,255,256,257,258],"NAFLD","NASH","NASH - Nonalcoholic Steatohepatitis","Fibrosis, Liver","Steatosis of Liver","Hepatocellular Carcinoma","Cardiovascular Diseases","Type 2 Diabetes","Dyslipidaemia","Hypertension","Obesity","Other Associated Comorbidities",[247,248,260,261,262,263],"Steatohepatitis","Liver","Cirrhosis","Non-alcoholic fatty liver disease","2023-01-05",{"date":266,"type":37},"2023-01-06",{"date":268,"type":37},"2015-05-01",{"date":270,"type":20},"2030-12-31",{"name":43,"class":44},37,""]