{"id":298,"date":"2016-08-04T10:43:34","date_gmt":"2016-08-04T10:43:34","guid":{"rendered":"http:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/?p=298"},"modified":"2022-04-13T13:59:11","modified_gmt":"2022-04-13T13:59:11","slug":"side-pro-study-a-measure-to-identify-treatment-side-effects-in-adults-with-an-intellectual-disability-and-epilepsy","status":"publish","type":"post","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/side-pro-study-a-measure-to-identify-treatment-side-effects-in-adults-with-an-intellectual-disability-and-epilepsy\/","title":{"rendered":"SIDE-PRO Study: A Measure To Identify Treatment Side Effects In Adults With An Intellectual Disability And Epilepsy"},"content":{"rendered":"<h3><em>Identifying treatment <strong><u>S<\/u><\/strong>ide effects in adults with an <strong><u>I<\/u><\/strong>ntellectual <strong><u>D<\/u><\/strong>isability and <strong><u>E<\/u><\/strong>pilepsy: Development of <strong><u>P<\/u><\/strong>atient-<strong><u>R<\/u><\/strong>eported <strong><u>O<\/u><\/strong>utcome Measure for identification of Anti-Epileptic Drug side effects (<strong>SIDE-PRO)<\/strong><\/em><\/h3>\n<h2>Study Background<\/h2>\n<p>We are conducting a study at Cardiff University to develop a patient report questionnaire on the side effects of anti-epileptic drugs in adults with epilepsy and learning disability. We would like to help make it easier for professionals to find out what problems people with learning disabilities and epilepsy have with their medicine.<\/p>\n<p>Although similar questionnaires are available for use in the general population, it is not clear whether these are appropriate for adults with a learning disability, and it may be difficult to spot side effects of drugs because of this.<\/p>\n<p>We are also interested in whether side effects influence behaviour and day to day living.<\/p>\n<p>It is hoped results will lead to better awareness and identification of anti-epileptic drug side effects in people with learning disabilities and epilepsy.<\/p>\n<h2>Options To\u00a0Participate<\/h2>\n<p>The study has a number of stages including:<\/p>\n<ul>\n<li>participant and carer focus groups<\/li>\n<li>face to face interviews with the study team (home based)<\/li>\n<li>postal questionnaires.<\/li>\n<\/ul>\n<p>We are currently on the focus group phase of the trial; however, we are recruiting for all stages.<\/p>\n<p>Participants are welcome to take part in just one part or all parts of the study.<\/p>\n<h2>Participants<\/h2>\n<p>For this study,\u00a0we are looking to recruit people who meet the following criteria:<\/p>\n<ul>\n<li>Live in the South Wales area<\/li>\n<li>Aged 18+<\/li>\n<li>Have a learning disability<\/li>\n<li>Have a diagnosis of epilepsy<\/li>\n<li>Are currently taking antiepileptic medication<\/li>\n<li>Have an identified carer who is also willing to take part<\/li>\n<li>Have capacity to consent to participate in the study.<\/li>\n<li>Have the ability to complete the study questionnaires in English (supported by a carer if required)<\/li>\n<\/ul>\n<h2>Carers<\/h2>\n<ul>\n<li>Live in the South Wales area<\/li>\n<li>Aged 18+<\/li>\n<li>Carer for a participant meeting the inclusion criteria<\/li>\n<li>Able to complete study questionnaires<\/li>\n<\/ul>\n<h2>How To Take Part<\/h2>\n<p>If you would like\u00a0further information about the\u00a0study:<\/p>\n<ol>\n<li>Please first read the\u00a0&#8220;<a href=\"http:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2016\/08\/Participant-Information-Sheet-SIDE-PRO.pdf\" rel=\"\">Participant Information Sheet (SIDE-PRO)<\/a>&#8221; or the \u201c<a href=\"http:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2016\/08\/Carer-Information-Sheet-SIDE-PRO.pdf\" rel=\"\">Carer Information Sheet (SIDE-PRO)<\/a>\u201d.<\/li>\n<li>If you are interested in taking part after reading the information sheet, email\u00a0<a href=\"http:\/\/Andrea Meek\" target=\"_blank\" rel=\"noopener\">Andrea Meek<\/a>\u00a0or telephone\u00a0+44(0)29 20687619<\/li>\n<\/ol>\n<p>Your clinical care will not be affected in any way if you do or do not take part in this study. If you do decide to take part in the study, you are\u00a0free to withdraw at any time.<\/p>\n<h2>Contact Us<\/h2>\n<p>SIDEPRO Study Team:\u00a0<a href=\"http:\/\/www.cardiff.ac.uk\/people\/view\/362476-mcnamara-rachel\" target=\"_blank\" rel=\"noopener\">Dr. Rachel McNamara<\/a>, <a href=\"http:\/\/www.cardiff.ac.uk\/people\/view\/122941-copeland-lauren\" target=\"_blank\" rel=\"noopener\">Dr. Lauren Copeland<\/a> and <a href=\"http:\/\/www.cardiff.ac.uk\/people\/view\/126567-meek-andrea\" target=\"_blank\" rel=\"noopener\">Andrea Meek<\/a><\/p>\n<p>For\u00a0more information or to participate in the study, email\u00a0<a href=\"http:\/\/Andrea Meek\" target=\"_blank\" rel=\"noopener\">Andrea Meek<\/a>\u00a0or telephone\u00a0+44(0)29 20687619<\/p>\n","protected":false},"excerpt":{"rendered":"Identifying treatment Side effects in adults with an Intellectual Disability and Epilepsy: Development of Patient-Reported Outcome Measure for identification of Anti-Epileptic Drug side effects (SIDE-PRO) Study Background We are conducting [&hellip;]","protected":false},"author":1248,"featured_media":308,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_post_was_ever_published":false},"categories":[31],"tags":[28,27,30,29,10],"class_list":["post-298","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-questionnaire","tag-clinical-research","tag-clinical-trial","tag-epilepsy","tag-patient-reported-outcome","tag-south-east-wales-trials-unit"],"jetpack_publicize_connections":[],"jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p7dIou-4O","jetpack-related-posts":[{"id":2030,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/purple-day-2021-why-epilepsy-research-is-so-vital\/","url_meta":{"origin":298,"position":0},"title":"Purple Day 2021: Why Epilepsy Research Is So Vital","author":"Cheney Drew","date":"March 26, 2021","format":false,"excerpt":"The 26th\u00a0March is otherwise known as \u2018Purple Day\u2019- a day where people are encouraged to where purple in recognition and support of people with epilepsy (PwE). Epilepsy is the most common chronic neurological condition, affecting between 1-3% of the population. It can affect anyone and although specific epilepsy syndromes ae\u2026","rel":"","context":"In &quot;Events&quot;","block_context":{"text":"Events","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/events\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2021\/03\/Epilepsy.png?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2021\/03\/Epilepsy.png?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2021\/03\/Epilepsy.png?resize=525%2C300&ssl=1 1.5x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2021\/03\/Epilepsy.png?resize=700%2C400&ssl=1 2x"},"classes":[]},{"id":2362,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/a-reflection-on-the-coverage-of-outcomes-in-the-pace-trial\/","url_meta":{"origin":298,"position":1},"title":"A reflection On Coverage Of Outcomes In The PACE Trial Compared To COS-AECOPD","author":"David Gillespie","date":"September 27, 2022","format":false,"excerpt":"By Dr. David Gillespie and Prof. Kerenza Hood Overview In 2014, the National Institute for Health Research (NIHR) funded a randomised controlled trial (RCT) evaluating the use of a C-reactive Protein (CRP) point-of-care test (POCT) for the management of people experiencing an acute exacerbation of chronic obstructive pulmonary disease (AECOPD)\u2026","rel":"","context":"In &quot;Events&quot;","block_context":{"text":"Events","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/events\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/09\/BLS8657_Print_Res-scaled.jpg?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/09\/BLS8657_Print_Res-scaled.jpg?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/09\/BLS8657_Print_Res-scaled.jpg?resize=525%2C300&ssl=1 1.5x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/09\/BLS8657_Print_Res-scaled.jpg?resize=700%2C400&ssl=1 2x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/09\/BLS8657_Print_Res-scaled.jpg?resize=1050%2C600&ssl=1 3x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/09\/BLS8657_Print_Res-scaled.jpg?resize=1400%2C800&ssl=1 4x"},"classes":[]},{"id":1645,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/clinical-trials-as-a-catalyst-for-change-in-the-big-easy-the-40th-society-for-clinical-trials-annual-meeting-new-orleans-usa\/","url_meta":{"origin":298,"position":2},"title":"Clinical Trials As A Catalyst For Change In The \u2018Big Easy\u2019 \u2013 The 40th Society For Clinical Trials Annual Meeting, New Orleans, USA","author":"Victoria Shepherd","date":"June 13, 2019","format":false,"excerpt":"By Victoria Shepherd and Nigel Kirby A taste of New Orleans At times New Orleans felt very much like Wales\u2026\u2026 wet. However, when the sun came out and the puddles dried up New Orleans was a place full of culture and friendly faces. The French Quarter is a vibrant place\u2026","rel":"","context":"In &quot;Events&quot;","block_context":{"text":"Events","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/events\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2019\/06\/New-Orleans-SCT.png?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2019\/06\/New-Orleans-SCT.png?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2019\/06\/New-Orleans-SCT.png?resize=525%2C300&ssl=1 1.5x"},"classes":[]},{"id":2816,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/ovarian-cancer-awareness-month-and-valtive1\/","url_meta":{"origin":298,"position":3},"title":"Ovarian Cancer Awareness Month And VALTIVE1","author":"Margherita Carucci","date":"March 1, 2024","format":false,"excerpt":"Ovarian cancer awareness month March is Ovarian Cancer Awareness Month. In this global campaign aiming at raising awareness, promoting research, fundraising, and supporting women with ovarian cancer around the world, we would like to introduce you to the VALTIVE1 study, one of the ovarian cancer trials that the Centre for\u2026","rel":"","context":"In &quot;Events&quot;","block_context":{"text":"Events","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/events\/"},"img":{"alt_text":"Image of Ovarian Cancer Month logo.","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2024\/03\/oca-2455641215.jpg?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2024\/03\/oca-2455641215.jpg?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2024\/03\/oca-2455641215.jpg?resize=525%2C300&ssl=1 1.5x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2024\/03\/oca-2455641215.jpg?resize=700%2C400&ssl=1 2x"},"classes":[]},{"id":2896,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/the-piccos-study-evaluating-anti-cancer-drug-delivery\/","url_meta":{"origin":298,"position":4},"title":"The PICCOS Study: Evaluating Anti-Cancer Drug Delivery","author":"Rebecca Hamilton","date":"April 24, 2024","format":false,"excerpt":"Study Name: Pressurised IntraPeritoneal Aerosolised Chemotherapy (PIPAC) in the management of cancer of the colon, ovary and stomach: a randomised controlled phase II trial of efficacy in peritoneal metastases (PICCOS for short). 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