bluuebunny/crossref_metadata_2025_split huggingface dataset:
Linking social media and medical record data: a study of adults presenting to an academic, urban emergency department
Authors: Padrez Kevin A , Ungar Lyle , Schwartz Hansen Andrew , Smith Robert J , Hill Shawndra , Antanavicius Tadas , Brown Dana M , Crutchley Patrick , Asch David A , Merchant Raina M 
Published: October 2015

BackgroundSocial media may offer insight into the relationship between an individual's health and their everyday life, as well as attitudes towards health and the perceived quality of healthcare services.ObjectiveTo determine the acceptability to patients and potential utility to researchers of a database linking patients’ social media content with their electronic medical record (EMR) data.MethodsAdult Facebook/Twitter users who presented to an emergency department were queried about their willingness to share their social media data and EMR data with health researchers for the purpose of building a databank for research purposes. Shared posts were searched for select terms about health and healthcare.ResultsOf the 5256 patients approached, 2717 (52%) were Facebook and/or Twitter users. 1432 (53%) of those patients agreed to participate in the study. Of these participants, 1008 (71%) consented to share their social media data for the purposes of comparing it with their EMR. Social media data consisted of 1 395 720 posts/tweets to Facebook and Twitter. Participants sharing social media data were slightly younger (29.1±9.8 vs 31.9±10.4 years old; p<0.001), more likely to post at least once a day (42% vs 29%; p=0.003) and more likely to present to the emergency room via self-arrival mode and have private insurance. Of Facebook posts, 7.5% (95% CI 4.8% to 10.2%) were related to health. Individuals with a given diagnosis in their EMR were significantly more likely to use terms related to that diagnosis on Facebook than patients without that diagnosis in their EMR (p<0.0008).ConclusionsMany patients are willing to share and link their social media data with EMR data. Sharing patients have several demographic and clinical differences compared with non-sharers. A database that merges social media with EMR data has the potential to provide insights about individuals’ health and health outcomes.
THE TOS2 STUDY: AN INTERNATIONAL MULTI-CENTRE AUDIT ASSESSING THE STANDARD OF NEUROLOGICAL EXAMINATION
Authors: Appleton JP , Ilinca A , Lindgren AG , Puschmann A , Habahbeh M , Siddiqui K , DeSilva R , Jones M , Butterworth R , Nicholl DJ 
Published: October 2015

Having previously demonstrated that in-patients referred to neurology at two UK hospitals were not fully examined prior to referral, we designed an audit with 80% power to detect a 10% increase in tendon hammer or ophthalmoscope use following an educational intervention.In-patients referred to neurology over a 4 month period in the UK, Jordan, Sweden and the United Arab Emirates were asked whether they recalled examination with a Tendon hammer, Ophthalmoscope and Stethoscope since admission. Results were disseminated to local medical teams and data were collected for a further 4 months. Pre and post-intervention data were available for 11 centres with 407 and 391 patients in each arm. 264 patients (64.86%) recalled examination with a tendon hammer pre-intervention, which significantly improved to 298 (76.21%) (p<0.001). 119 (29.24%) recollected ophthalmoscopy pre-intervention, which significantly improved to 149 (38.11%) (p=0.009). 321 (78.87%) recalled examination with a stethoscope pre-intervention, which significantly improved to 330 (84.4%) (p=0.045). Most patients were not fully examined prior to neurology referral, yet a simple assessment score and educational intervention can improve the standard of neurological examination. This is the largest and – to our knowledge – only study to assess the standard of neurological examination internationally. This has implications for national neurological educators.
ETHNICITY AND MULTIPLE SCLEROSIS PREVALENCE IN EAST LONDON
Authors: Albor Christo , Sautoy Timothy du , Vanan Narmadha Kali , Boomla Kambiz , Schmierer Klaus 
Published: October 2015

BackgroundThere is a perceived consensus that the incidence and prevalence rates of MS in countries with a White majority are lower in the minority ethnic population than in the White population. Often-cited UK-based studies relevant to this were conducted over twenty years ago. In our study we update the UK-based literature.MethodsElectronic records from GPs in the four innermost east London boroughs were queried for the number of patients with an MS diagnosis, grouped by ethnicity, into 5-year age bands. Compared against total registered GP patients in the area (c.900K), we calculated the age-standardised MS prevalence separately, for White, Black and South Asian populations.ResultsOverall prevalence was 111 per 100K (152 for women, 70 for men). This was 180, 74, and 29 for the White, Black and South Asian populations respectively. The sex ratios (female:male) were 2.2:1, 2.1:1 and 2.8:1 respectively.ConclusionInner east London is an ideal area to study ethnicity-specific prevalence, with a population that is 36% White, 16% Black, 30% South Asian and 18% Other. MS prevalence was considerably lower amongst Black and South Asian populations, compared to the White population, by 59% and 84% respectively. Our findings are consistent with previous studies.
REDUCED MS RELAPSE RATES WITH NATALIZUMAB: TOP UK COHORT
Authors: Nicholas Richard , Berry Roger 
Published: October 2015

IntroductionThe Tysabri® Observational Program (TOP) is a 10-year, ongoing, global, open-label study of long-term outcomes in natalizumab-treated patients with relapsing-remitting multiple sclerosis.MethodsBaseline characteristics were summarised. On-treatment annualised relapse rate (ARR) was compared with baseline.ResultsAs of 1 May 2014, the UK cohort included 134 patients. Median disease duration was 5.3 years and 84 patients (62.7%) had prior treatment with ≥1 other therapy. ARR decreased from 2.21 at baseline to 0.29 (86.9% reduction; p<0.0001); on-treatment ARR was low with ≥6 months of treatment (0.29; 87.2% reduction; p<0.0001; n=120) and remained low after ≥3.5 years (0.33; 85.7% reduction; p<0.0001; n=20). In patients previously treated with interferon or glatiramer acetate, ARR decreased by 83.5%–87.7% (p≤0.0009). Relapses resulting in hospitalisation or steroid treatment decreased by 93.3% (p<0.0001) and 86.5% (p<0.0001), respectively.ConclusionsUK TOP patients exhibited ≥83.5% reduction in ARR with ≥6 months of natalizumab treatment regardless of prior therapy, a reduction maintained over ≥3.5 years with no waning of effect. Relapses resulting in hospitalisation or steroid treatment were significantly reduced post natalizumab therapy initiation.Sponsored by Biogen Idec Ltd. Disclosures: RN: grant and conference travel support from Biogen Idec Ltd. RB: employee of Biogen Idec Ltd.
COGNITIVE REHABILITATION IN MULTIPLE SCLEROSIS
Authors: Campbell Jamie , Cercignani Mara , Langdon Dawn , Rashid Waqar 
Published: October 2015

Background/aimsTo explore the feasibility and efficacy of computerised, home-based cognitive rehabilitation in patients with multiple sclerosis using neuropsychological assessment and structural and functional MRI techniques.Materials, methods or case report38 patients with MS and evidence of cognitive impairment on the Brief International Cognitive Assessment for Multiple Sclerosis (BICAMS) test battery were enrolled and randomly assigned to undergo computerised cognitive rehabilitation (n=19) for six weeks or to a control condition (n=19). All patients underwent MRI at baseline (T1) and post-intervention (T2). Changes in cortical activations were explored using an n-back fMRI paradigm.ResultsCompared to baseline, patients in the treatment group showed significant improvement in the Brief Visuospatial Memory Test at T2 (p=0.035) and exhibited altered cortical fMRI activations compared to controls.ConclusionOur preliminary data support the hypothesis that home-based, computerised cognitive rehabilitation is a feasible and effective approach to improving cognitive performance in patients with MS and may reflect underlying changes in brain activations.BICAMS is a sensitive and easy to administer tool for identifying cognitive impairment in MS in the outpatient setting. Identification of cognitive impairment may have important treatment implications in the future.
THE MS-SMART TRIAL IN SECONDARY PROGRESSIVE MULTIPLE SCLEROSIS: A MULTI-ARM, MULTI-CENTRE TRIAL OF NEUROPROTECTION
Authors: Chataway Jeremy , Chandran Siddharthan , Miller David , Giovannoni Gavin , Wheeler-Kingshott Claudia , Pavitt Sue , Stallard Nigel , Hawkins Clive , Sharrack Basil ,   for the MS-SMART trialists
Published: October 2015

There is currently no treatment for secondary progressive multiple sclerosis (SPMS) which determines the majority of disability in multiple sclerosis. The MS-SMART trial is a multi-arm, multi-centre, phase 2 randomised trial for patients with SPMS. A total of 440 patients with progressing SPMS will be recruited in England and Scotland and randomised to one of 4 blinded arms: amiloride 5mg bd, riluzole 50mg bd, fluoxetine 20mg bd or placebo. These agents have been chosen after an extensive systematic review which has suggested putative neuroprotective properties. Patients will be followed up for 96 weeks with outcome data collected after 0, 24, 48 and 96 weeks. The primary endpoint is MRI atrophy rate. A wide range of relevant secondary and mechanistic exploratory outcomes will be collected including: MR spectroscopy, MTR, grey matter volume cervical cord atrophy, CSF neurofilament levels and optical coherence tomography. This trial is now open for recruitment in 2015.This independent research is awarded by the Efficacy and Mechanism Evaluation Programme (EME) and funded by the Medical Research Council (MRC) and the Multiple Sclerosis Society (MS Society) and managed by the National Institute for Health Research (NIHR) on behalf of the MRC-NIHR partnership.
EFFECT OF FINGOLIMOD VS. IFN-BETA1A ON NO EVIDENCE OF DISEASE ACTIVITY
Authors: Silber E , Montalban X , Barkhof F , Khatri B , Hartung HP , Ritter S , Meier D Piani , Tomic D , Kappos L 
Published: October 2015

IntroductionTo compare effects of fingolimod vs. interferon beta-1a (IFN) in achieving no evidence of disease activity (NEDA-4) in patients with relapsing-remitting multiple sclerosis (RRMS) in the TRANSFORMS study. Adding Brain Volume Loss (BVL) to NEDA results in a more comprehensive and balanced measure of focal and diffuse damage.MethodsIn this post-hoc analysis, we used data from the fingolimod 0.5 mg daily (n=431) and IFN 30 µg weekly (n=435) groups. NEDA-4 was defined as absence of confirmed relapses, new/enlarging T2 lesions, 6-month confirmed disability progression (CDP) and BVL (annual percent brain volume change [PBVC] of >−0.4%). 3-month CDP and additional PBVC cut-offs representing mean BVL rates in healthy adults (0.2%), MS patients (0.6%), or accelerated BVL (1.2%) were also tested. Odds ratios (OR) were calculated for differences between fingolimod- and IFN-treated groups.ResultsSignificantly more fingolimod (n=425) than IFN-treated patients (n=418) achieved NEDA-4 status: 27.9% vs. 16.7% (OR:1.93; 95% CI: 1.36–2.73; p=0.0002). Results were similar for other PBVC cut-offs: (>–0.2%): 20.2% vs 11.5%; 1.94; 1.30–2.90, p=0.0011; (>–0.6%): 34.6% vs 20.4%; 2.06; 1.49–2.86, p<0.0001; (>–1.2%): 40.8% vs 26.4%; 1.92; 1.42–2.60; p<0.0001.ConclusionFingolimod-treated patients had twice the odds of achieving NEDA-4 status over 1 year as patients treated with IFN.
SUSTAINED LOW RATE BRAIN VOLUME LOSS IN LONG TERM FINGOLIMOD TREATMENT
Authors: Silber E , Radue EW , Barkhof F , Gottschalk R , Zhang Y , Cappiello L , von Rosenstiel P , Kappos L 
Published: October 2015

ObjectivesTo evaluate long-term Brain Volume Loss (BVL) in patients who received fingolimod 0.5 mg or placebo in the FREEDOMS or FREEDOMS-2, and LONGTERMS studies. Methodspooled-analysis of patients who completed FREEDOMS and FREEDOMS-2 core studies and received at least one fingolimod-dose in LONGTERMS. We calculated the percent brain volume change (PBVC) and the mean annualized rate of brain atrophy (ARBA) at different time points using SIENA (Structural Image Evaluation using Normalization of Atrophy). Results up-to month (M)72 are presented for continuous-fingolimod 0.5 mg patient group and for placebo-fingolimod patient groupResults2355 patients (fingolimod 0.5 mg: 783, placebo-fingolimod: 773). Median exposure to fingolimod was 915(271–1689); 18.8% of patients had fingolimod-exposure for =2160 days (6 years). At M6,12,24,36, and 48, mean PBVC was –0.22 vs. –0.36; –0.44 vs. –0.63; –0.83 vs. –1.28; –1.22 vs. –1.73 and –1.61 vs. –2.16 for fingolimod 0.5 mg vs. placebo-fingolimod. Mean ARBA was –0.43 vs. –0.70; –0.45 vs. –0.64; –0.43 vs. –0.67; –0.41 vs. –0.59 and –0.43 vs. –0.58. Similar pattern observed at M60 and 72 (smaller patient numbers) for PBVC (–1.49 vs. – 2.41 and –1.58 vs. –2.99) and ARBA (–0.31 vs. –0.51 and –0.27 vs. –0.52). Long–term treatment with fingolimod 0.5mg is attended by sustained low rates of BVL upto–6 years. Patients switching from placebo to fingolimod did not catch-up regarding BVL.
ARE WHITE MATTER ABNORMALITIES A CAUSE OF ‘UNEXPLAINED DIZZINESS’? A RETROSPECTIVE BI–CENTRE STUDY
Authors: Ahmad Hena , Cerchiai Niccolò , Mancuso Michelangelo , Casani Augusto , Bronstein Adolfo 
Published: October 2015

IntroductionAlthough cerebral small vessel disease is a significant contributor to the development of imbalance and falls in the elderly, whether it also contributes to the development of dizziness is not known.MethodsA retrospective case analysis was conducted for 125 dizzy patients referred to two neuro-otology tertiary centres in London and Pisa. Specific search criteria of “white matter disease” was applied to databases and patients were divided into ‘explained’ causes of dizziness (ie benign positional vertigo, orthostatic hypotension, cerebellar ataxias) and ‘unexplained’ causes of dizziness. White matter hyperintensities (WMH) in MRI (T2 weighted and FLAIR) were blindly rated according to the Fazekas scale.Results61 patients (mean age=72SD=7.95 years) in the ‘unexplained’ group and 64 (mean age=72.01SD=8.28 years) in the ‘explained’ group were recruited. The overall frequency of lesions (Fazekas 1–3) differed between the groups (p=0.015). The frequency of severe lesions (Fazekas 3) was significantly higher in the unexplained group (21%) than in the explained group (5%; p=0.005).ConclusionIncreased severity of WM abnormalities in cases of unexplained dizziness suggests that such abnormalities are contributory to the development of dizziness. WM lesions may induce dizziness either because patients perceive a degree of objective unsteadiness or by a cortical-subcortical disconnection syndrome.
SAFETY AND TOLERABILITY OF TERIFLUNOMIDE IN CLINICAL STUDIES
Authors: Barnes David , Leist Thomas , Freedman Mark , Olsson Tomas , Miller Aaron , Wolinsky Jerry , O'Connor Paul , Benamor Myriam , Truffinet Philippe , Comi Giancarlo 
Published: October 2015

IntroductionTeriflunomide, approved for the treatment of relapsing-remitting multiple sclerosis, has a well-characterized safety profile based on individual clinical studies. We report pooled safety and tolerability data from four, double-blind, placebo-controlled trials of teriflunomide. Post-approval updates on hair thinning and pregnancy outcomes, sometimes concerns for patients initiating teriflunomide, are reported.MethodsData were pooled from phase 2 (NCT01487096) and phase 3 TEMSO (NCT00134563), TOWER (NCT00751881), and TOPIC (NCT00622700) studies. Patients were randomized to receive teriflunomide 14 mg, 7 mg, or placebo. Safety analyses were performed for all patients exposed to teriflunomide.ResultsThe pooled dataset included 3044 patients. Commonly reported adverse events (AEs) were in accordance with individual clinical studies, most being transient and mild-to-moderate in intensity. Incidence of hepatic AEs was higher in teriflunomide groups; however, serious hepatic AEs were similar across groups (∼2–3%). Hair thinning was higher in teriflunomide than placebo groups, but typically resolved on treatment without intervention and led to discontinuation in <2% of patients. No structural or functional abnormalities were reported in 42 newborns from teriflunomide-exposed parents.ConclusionsThese data from >6800 patient-years of teriflunomide exposure were consistent with individual studies and no new, unexpected safety signals were observed. (Study supported by Genzyme, a Sanofi company).
DISEASE MODIFYING TREATMENT UTILISATION IN MULTIPLE SCLEROSIS
Authors: Williams Owain H , Harding Katharine E , Willis Mark , Pickersgill Trevor , Wardle Mark , Robertson Neil P 
Published: October 2015

BackgroundThe number of disease modifying treatments (DMT) for multiple sclerosis continues to expand, although there is limited data concerning their long term use and utilisation in clinical practice.ObjectiveDescriptive analysis of historic and current DMT utilisation in relation to treatment pathways, course length and discontinuation reasons in real practice.MethodsA subset of a population-based cohort of MS identified 270 patients with prospective data on DMT utilisation, reasons for discontinuation were classified. Descriptive and survival analysis were conducted.Results498 drug initiation events were identified in 270 patients. 2nd line treatment was initiated in 39%, 3rd line=9%, 4th line=3%, 5th line=0.4%, 6th line=0.4%. Commonest DMT initiated was Interferon (67%) followed by Alemtuzumab, with proportional increase in prescription with each line of treatment escalation (1st=19%, 2nd=26%, 3rd=36%). Persistence on first DMT was a median of 1.7 (1.4–2.3) years for Interferon and 2.7 (0.8–5.1) years for Copaxone, excluding fixed course DMTs. Discontinuation occurred on 307 occasions, with the commonest reason being intolerance of side effects in 57%.ConclusionThe greatest limitation to drug efficacy will be its course length and its appropriate utilisation, thus a greater understanding of drug indication and discontinuation will be of benefit in clinical practice.
CASE REPORT: A PRESUMPTIVE DIAGNOSIS OF ACUTE DISSEMINATED ENCEPHALOMYELITIS
Authors: Al-Ansari Aseel , Hill Marguerite 
Published: October 2015

A 42-year old previously well man presented with a ten-day history of a flu-like illness, headache, back pain and urinary retention. He deteriorated in hospital with pyrexia and agitation and developed acute respiratory compromise necessitating intubation. MR imaging of the neural axis demonstrated enhancement of the leptomeninges, the splenium of the corpus callosum and patchy enhancement of the cervical and thoracic cord. CSF analysis revealed a white cell count of 211 (95% lymphocytes), protein 2.96 g/L and glucose 3.2 mmol/L (serum glucose 9.6 mmol/L).Initial working diagnosis was of a meningoencephalitis with a transverse myelitis and given the clinical presentation and CSF findings an infectious aetiology was strongly considered. Treatment with anti-bacterial, anti-viral, anti-fungal and anti-tuberculous agents was initiated. Repeated CSF testing yielded negative PCR and culture results for a range of bacterial and viral causes, including tuberculosis. HIV was negative. Aquaporin-4 and MOG antibodies were negative.A neuro-inflammatory cause, most probably post-infectious, was considered, and steroids initiated. This patient showed a good response to high dose oral steroids, improving over a number of weeks from complete quadriparesis with facial paralysis and ophthalmoplegia to regaining excellent facial and upper limb strength.
GLYCINE RECEPTOR ANTIBODY—A MARKER FOR NMO/ NON-MS DEMYELINATION?
Authors: Hamid Shahd , Elsone Liene , Waters Patrick , Woodhall Mark Woodhall , Mutch Kerry , Rafferty Cahal , Tang Lisa , Solomon Tom , Vincent Angela , Jacob Anu 
Published: October 2015

BackgroundAntibodies against glycine receptors (GlyR Ab) have been strongly linked to progressive encephalomyelitis with rigidity and myoclonus (PERM). Their association with other neurological disorders is poorly understood.MethodsWe looked retrospectively at all patients who were tested for (GlyR Abs) in the Walton Centre between 2010–2014.Results138 patients were tested. The pre-test diagnoses (n) were transverse myelitis (34), NMO (22, (7 AQP4 IgG+ve and 15 AQP4 IgG-ve), optic neuritis (17), MS (22), ADEM (4), other atypical demyelination (4), encephalitis (11), epilepsy (4), dementia (4), parkinsonism (3), functional disorders (3) and others (10). 53.6% (74) had a relapsing course6/138 (4%) were positive for GlyR Ab. The diagnoses (n) were optic neuritis (2) one of which was AQP4 IgG+ve, NMO-AQP4-IgG negative (1), transverse myelitis (1), tumefactive demyelination (1) and undiagnosed spastic ataxic syndrome with normal imaging (1). 5/6 had a relapsing course and are on immunosuppressants.ConclusionAntibodies against GlyR are not common and seem to be associated with some non-PERM inflammatory CNS diseases, with a relapsing course. Larger studies are required to understand the clinical and prognostic significance of these early findings.
HASHIMOTO'S ENCEPHALOPATHY PRESENTING AS REFRACTORY HYPOTHERMIA
Authors: O'Sullivan Oliver , Sturrock Aaron , Jacob Saiju 
Published: October 2015

Hashimoto's encephalopathy (HE) is a neuropsychiatric condition characterised by elevated thyroid autoantibodies and an exquisite responsiveness to steroids. Patients may present with acute encephalopathic, chronic psychiatric, ataxia, CJD-like and limbic encephalitis symptoms. We report here, for the first time, a case of HE presenting with profound, refractory and recurrent hypothermia.A 58-year-old lady was admitted following an episode of slurred speech. At presentation GCS was 15, with a temperature of 28C and pulse of 35–45 bpm. She later developed progressive slurring dysarthria, and worsening paranoid ideation and delusions. Despite active warming with bear huggers, she remained hypothermic. 11 days after admission, her GCS dropped to 5, so was intubated and ventilated.The TPO antibody was raised at 507IU (normal 0–59IU). A diagnosis of HE was made and she responded dramatically to IV methylprednisolone. While rehabilitating on the ward one month later, her temperature fell to 33.5C and within 24 hours she was paranoid and agitated. A relapse of the HE was suspected. After a further course of IVMP, her temperature normalised, and confusion resolved within 36 hours.This case further expands the clinical phenotype of Hashimoto's encephalopathy. Furthermore it bears clinical similarities to disorders of hypothalamic dysfunction both traumatic, chronic inflammatory, and that after clonidine toxicity suggesting a possible target for future investigations.