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Sökning: onr:"swepub:oai:DiVA.org:umu-142684" > International Surve...

LIBRIS Formathandbok  (Information om MARC21)
FältnamnIndikatorerMetadata
00003542naa a2200445 4500
001oai:DiVA.org:umu-142684
003SwePub
008171211s2017 | |||||||||||000 ||eng|
0247 a https://urn.kb.se/resolve?urn=urn:nbn:se:umu:diva-1426842 URI
0247 a https://doi.org/10.1080/21678421.2017.13491502 DOI
040 a (SwePub)umu
041 a engb eng
042 9 SwePub
072 7a ref2 swepub-contenttype
072 7a art2 swepub-publicationtype
1001 a De Carvalho, Mamede4 aut
2451 0a International Survey of ALS Experts about Critical Questions for Assessing Patients with ALS
264 c 2017-07-13
264 1b Taylor & Francis,c 2017
338 a print2 rdacarrier
520 a Objective: To define an applicable dataset for ALS patient registries we weighted specific clinical items as scored by worldwide ALS experts.Methods: Sixty participants were invited based on relevant clinical work, publications and personal acquaintance. They rated 160 clinical items consensually agreed by the members of our project, incorporating specialists from five European Centres. Scoring scheme was defined as: 1 - essential; 2 - important; 3 - not very important. A mixed effect model was applied to rank items and to find possible correlations with geographical region (Europe vs. outside Europe).Results: We received 40 responses, 20 from Europe and 20 from outside; 42/160 data were scored as essential by >50% of the respondents, including: date of birth, gender, date of disease onset, date of diagnosis, ethnicity, region of onset, predominant upper neuron (UMN) or lower motor neuron (LMN) impairment, proximal versus distal weakness, respiratory symptoms, dysarthria, weight loss, signs of LMN/UMN involvement, emotional incontinence, cognitive changes, respiratory signs, neck weakness, body mass index, ALSFRS-R at entry, ALSFRS-R subscores at entry, timing and pattern of spreading and staging, electromyography, spirometry, MRI, CK level, riluzole intake, genetic background, history of physical exercise and previous and current main occupation. Four components were scored as non-relevant, including place of birth, blood pressure and pain at onset. There was no significant difference between regions (European vs. non-European countries).Conclusions: Our study identified a consensual set of clinical data with 42 specific items that can be used as a minimal data set for patient registers and for clinical trials.
650 7a MEDICIN OCH HÄLSOVETENSKAPx Klinisk medicinx Neurologi0 (SwePub)302072 hsv//swe
650 7a MEDICAL AND HEALTH SCIENCESx Clinical Medicinex Neurology0 (SwePub)302072 hsv//eng
653 a amyotrophic lateral sclerosis
653 a hierarchy
653 a signals
653 a survey
653 a symptoms
7001 a Ryczkowski, Adam4 aut
7001 a Andersen, Peter M.u Umeå universitet,Klinisk neurovetenskap4 aut0 (Swepub:umu)pean0001
7001 a Gromicho, Marta4 aut
7001 a Grosskreutz, Julian4 aut
7001 a Kuzma-Kozakiewicz, Magdalena4 aut
7001 a Petri, Susanne4 aut
7001 a Piotrkiewicz, Maria4 aut
7001 a Miltenberger Miltenyi, Gabriel4 aut
7102 a Umeå universitetb Klinisk neurovetenskap4 org
7730 t Amyotrophic Lateral Sclerosis and Frontotemporal Degenerationd : Taylor & Francisg 18:7-8, s. 505-510q 18:7-8<505-510x 2167-8421x 2167-9223
8564 8u https://urn.kb.se/resolve?urn=urn:nbn:se:umu:diva-142684
8564 8u https://doi.org/10.1080/21678421.2017.1349150

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