infonihr-open-dataset https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=very+rare+diseases&start=0 Records for the dataset 'infonihr-open-dataset' Tue, 29 Oct 2024 12:31:59 +0000 12/205/36 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:307af4c396d3d92d0ca698163f535c938ea0df44 Tue, 29 Oct 2024 11:39:38 +0000 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:307af4c396d3d92d0ca698163f535c938ea0df44 AI_AWARD02579 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:683c8809aca78d650aa0d081c779f8b7eb766a2c Tue, 29 Oct 2024 11:39:38 +0000 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:683c8809aca78d650aa0d081c779f8b7eb766a2c COV-LT2-0022 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:aa4f9c2d4c7d9814e1c59129206b46b0f335f961 Tue, 29 Oct 2024 11:39:38 +0000 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:aa4f9c2d4c7d9814e1c59129206b46b0f335f961 NIHR128996 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:da21f3a843bc58716e8a61522809486a7c960c58 Tue, 29 Oct 2024 11:39:38 +0000 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:da21f3a843bc58716e8a61522809486a7c960c58 NIHR206271 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:c8ea28162672f84049f08d05e48f217bc6b923f0 Tue, 29 Oct 2024 11:39:38 +0000 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:c8ea28162672f84049f08d05e48f217bc6b923f0 NIHR301614 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:9b07732a37d941b0ad0384e0b6802965b048ffe1 Tue, 29 Oct 2024 11:39:38 +0000 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:9b07732a37d941b0ad0384e0b6802965b048ffe1 NIHR302309 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:53047919e24169752f80a53f55c89b3d36e2a5a8 Tue, 29 Oct 2024 11:39:38 +0000 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:53047919e24169752f80a53f55c89b3d36e2a5a8 NIHR302333 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:8b394d65e3ffa178980bfc6ace4eb4f81eccd2ee Tue, 29 Oct 2024 11:39:38 +0000 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:8b394d65e3ffa178980bfc6ace4eb4f81eccd2ee PB-PG-1014-35016 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:f16a182fcf1d1bc7401e35e6b4b18ce763ab9403 Tue, 29 Oct 2024 11:39:38 +0000 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:f16a182fcf1d1bc7401e35e6b4b18ce763ab9403 RP-PG-1212-20009 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:d42b6fe50d60de88ae843bf820b8b58a69022f14 Tue, 29 Oct 2024 11:39:38 +0000 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:d42b6fe50d60de88ae843bf820b8b58a69022f14 12/66/35 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:0d0c56e6a907ebd861a0022afa0ea22ac7861b36 Tue, 29 Oct 2024 11:39:38 +0000 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:0d0c56e6a907ebd861a0022afa0ea22ac7861b36 15/09/04 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:b957c03935ed638e7a092011b38f8be55ff4a4cc Tue, 29 Oct 2024 11:39:38 +0000 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:b957c03935ed638e7a092011b38f8be55ff4a4cc 16/116/82 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:c3ab5a97d5e302bf565424dc8946a10bed88541f Tue, 29 Oct 2024 11:39:38 +0000 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:c3ab5a97d5e302bf565424dc8946a10bed88541f 16/137/95 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:f2467b43e564de2041f1aa5c7df86632e5ee5452 Tue, 29 Oct 2024 11:39:38 +0000 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:f2467b43e564de2041f1aa5c7df86632e5ee5452 AI_AWARD02073 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:d536069294a38630a8b9099cdad51ccf73245ba8 Tue, 29 Oct 2024 11:39:38 +0000 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:d536069294a38630a8b9099cdad51ccf73245ba8 ICA-CL-2017-03-007 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:16474c26f52ebdeaa15fa3e57eff912806f3d6bc Tue, 29 Oct 2024 11:39:38 +0000 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:16474c26f52ebdeaa15fa3e57eff912806f3d6bc II-AR-1109-11023 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:fe9cbed90c5b6365dc5000a6d4cc50ca949290e0 Tue, 29 Oct 2024 11:39:38 +0000 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:fe9cbed90c5b6365dc5000a6d4cc50ca949290e0 NIHR135073 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:0cce0a65c08ce81adfe54259c3e6ad4aecfcbc0c Tue, 29 Oct 2024 11:39:38 +0000 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:0cce0a65c08ce81adfe54259c3e6ad4aecfcbc0c NIHR200784 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:265792d9229c6be9ffb068e2a6f48954cf9c5ffe Tue, 29 Oct 2024 11:39:38 +0000 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:265792d9229c6be9ffb068e2a6f48954cf9c5ffe NIHR300099 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:461f1e8493525419095ceff39874f4e9e6c97092 Tue, 29 Oct 2024 11:39:38 +0000 https://nihr.opendatasoft.com/explore/dataset/infonihr-open-dataset/?q=recordid:461f1e8493525419095ceff39874f4e9e6c97092
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<title>12/205/36</title>
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<![CDATA[ 14/150 (12/205 Very Rare Diseases project number 112195): A randomised trial comparing surgical and radiotherapy strategies enabling rational treatment selection for primary Merkel Cell Carcinoma (MCC), a rare virus and immune-related aggressive skin cancer ]]>
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<![CDATA[ MendelScan - An innovative AI case-finding platform to accelerate the diagnosis of rare diseases using primary care electronic health records ]]>
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<![CDATA[ Percutaneous Auricular Nerve Stimulation for Treating Post-COVID Fatigue (PAuSing-Post-COVID Fatigue) ]]>
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<pubDate>Tue, 29 Oct 2024 11:39:38 +0000</pubDate>
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<![CDATA[ Left ventricular assist devices as destination therapy for advanced heart failure ]]>
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<title>NIHR206271</title>
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<![CDATA[ A Work And Health Research Data (AWAHRD) Platform ]]>
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<![CDATA[ Transforming treatment of immune-mediated inflammatory diseases through better trials and evaluations ]]>
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<title>NIHR302309</title>
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<![CDATA[ How can we Prognosticate airway and Respiratory functiOn decline in Mucopolysaccharidosis type IVA? From ‘bIg data’ in rare diseases to preciSion medicinE (PROMISE) ]]>
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<pubDate>Tue, 29 Oct 2024 11:39:38 +0000</pubDate>
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<![CDATA[ Evaluating test accuracy without assuming a perfect reference test: application to depression ]]>
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<![CDATA[ A study to define patient priorities and preferences when consenting to whole genome sequencing to ensure informed choice ]]>
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<title>RP-PG-1212-20009</title>
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<![CDATA[ Developing a psychological intervention to improve ultraviolet protection and clinical outcomes in Xeroderma Pigmentosum. ]]>
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<title>12/66/35</title>
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<![CDATA[ Gene therapy for choroideremia - a Phase II clinical trial ]]>
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<title>15/09/04</title>
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<![CDATA[ (REBALANCE) REview of Behaviour And Lifestyle interventions for severe obesity: AN evidenCE synthesis ]]>
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<![CDATA[ CONCORD: CO-ordiNated Care Of Rare Diseases ]]>
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<![CDATA[ NIHR Global Health Research Group on Global COPD in Primary Care, University of Birmingham ]]>
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<title>AI_AWARD02073</title>
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<![CDATA[ Development of AI Techniques to Predict Eye Cancer Using Big Longitudinal Data ]]>
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<pubDate>Tue, 29 Oct 2024 11:39:38 +0000</pubDate>
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<title>ICA-CL-2017-03-007</title>
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<![CDATA[ Developing the utility of multiple breath washout in the paediatric tertiary centre ]]>
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<![CDATA[ Head Articulation Control System ]]>
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<pubDate>Tue, 29 Oct 2024 11:39:38 +0000</pubDate>
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<![CDATA[ Understanding Mechanisms of Thrombosis and Thrombocytopenia in COVID-19 and with SARS-CoV-2 Vaccines ]]>
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<![CDATA[ Evaluating Chronic Pain in Autosomal Dominant Polycystic Kidney Disease using a Patient-Centred Approach to Data Collection and Synthesis: A National Prospective Observational Study (EASE-PKD) ]]>
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<pubDate>Tue, 29 Oct 2024 11:39:38 +0000</pubDate>
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<title>NIHR300099</title>
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<![CDATA[ Delivering genomic sequencing in clinical practice: a patient-centred evaluation of the new NHS Genomic Medicine Service ]]>
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<pubDate>Tue, 29 Oct 2024 11:39:38 +0000</pubDate>
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