{"id":18691,"date":"2018-12-06T12:06:36","date_gmt":"2018-12-06T12:06:36","guid":{"rendered":"http:\/\/wames.org.uk\/cms-english\/?p=18691"},"modified":"2018-12-06T12:07:41","modified_gmt":"2018-12-06T12:07:41","slug":"the-uk-me-cfs-biobank","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/the-uk-me-cfs-biobank\/","title":{"rendered":"The UK ME\/CFS Biobank"},"content":{"rendered":"

The UK ME\/CFS Biobank: A disease-specific biobank for\u00a0advancing clinical research into myalgic encephalomyelitis\/\u00a0chronic fatigue syndrome<\/a>, by\u00a0Eliana M. Lacerda, Kathleen Mudie, Caroline C. Kingdon, Jack D. Butterworth, Shennae O’Boyle, Luis Nacul in<\/span>\u00a0Frontiers in Neurology<\/em>, 14 Nov 2018 [preprint<\/p>\n

Abstract:<\/strong><\/p>\n

\"\"Myalgic encephalomyelitis\/chronic fatigue syndrome (ME\/CFS) is a\u00a0disabling disease characterized by unexplained incapacitating fatigue,\u00a0accompanied by variable multi-systemic symptoms. ME\/CFS causes a\u00a0significant personal and public health burden, and urgently requires the\u00a0coordination of research efforts to investigate its etiology and
\npathophysiology and to develop and validate sensitive and specific\u00a0biomarkers to confirm diagnosis.<\/p>\n

This narrative paper describes how\u00a0people with ME\/CFS, together with a multidisciplinary team of\u00a0researchers, have established the UK ME\/CFS Biobank (UKMEB), a unique
\nresearch infrastructure specifically designed to expedite biomedical\u00a0research into\u00a0 ME\/CFS. We describe the journey that led to its\u00a0conceptualization and operation, and how the resource has served as a\u00a0model disease-specific biobank, aggregating human biospecimens alongside\u00a0comprehensive health information on participants.<\/p>\n

The UKMEB currently\u00a0has data and samples from 600 donors including people with ME\/CFS and a\u00a0comparison group with multiple sclerosis and healthy controls. A
\nlongitudinal sub-cohort has been established of participants having\u00a0follow-up assessments at multiple time-points.<\/p>\n

As an open resource for\u00a0quality and ethical research into ME\/CFS, biological samples and data\u00a0have not only been analysed within our research team but have also been\u00a0shared with researchers across Europe, America and the Middle East. We\u00a0continue to encourage researchers from academic and commercial sectors\u00a0to access the UKMEB. Major steps have been taken and challenges remain;\u00a0these include sustainability and expansion, and harmonization of\u00a0processes to facilitate integration with other bioresources and\u00a0databanks internationally.<\/p>\n

Keywords: ME\/CFS, Biobank, Research infrastructure, Partnership, Patient
\nengagement (PE)<\/p>\n

——–<\/p>\n","protected":false},"excerpt":{"rendered":"

The UK ME\/CFS Biobank: A disease-specific biobank for\u00a0advancing clinical research into myalgic encephalomyelitis\/\u00a0chronic fatigue syndrome, by\u00a0Eliana M. Lacerda, Kathleen Mudie, Caroline C. Kingdon, Jack D. Butterworth, Shennae O’Boyle, Luis Nacul in\u00a0Frontiers in Neurology, 14 Nov 2018 [preprint Abstract: Myalgic encephalomyelitis\/chronic … Continue reading →<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_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}},"categories":[1],"tags":[1834,3589,3425,3529,4740,4718,4741,2667],"class_list":["post-18691","post","type-post","status-publish","format-standard","hentry","category-news","tag-biomedical-research","tag-caroline-c-kingdon","tag-dr-luis-nacul","tag-eliana-m-lacerda","tag-jack-d-butterworth","tag-kathleen-mudie","tag-shennae-oboyle","tag-uk-mecfs-biobank"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5qkYK-4Rt","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/18691","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/comments?post=18691"}],"version-history":[{"count":5,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/18691\/revisions"}],"predecessor-version":[{"id":18861,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/18691\/revisions\/18861"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=18691"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=18691"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=18691"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}