BMC Med Inform Decis Mak - The feasibility of collecting information from people with Multiple Sclerosis for the UK MS Register via a web portal: characterising a cohort of people with MS.

Tópicos

{ intervent(3218) particip(2042) group(1664) }
{ age(1611) year(1155) adult(843) }
{ data(3963) clinic(1234) research(1004) }
{ data(3008) multipl(1320) sourc(1022) }
{ inform(2794) health(2639) internet(1427) }
{ data(1714) softwar(1251) tool(1186) }
{ monitor(1329) mobil(1314) devic(1160) }
{ survey(1388) particip(1329) question(1065) }
{ patient(2315) diseas(1263) diabet(1191) }
{ medic(1828) order(1363) alert(1069) }
{ implement(1333) system(1263) develop(1122) }
{ treatment(1704) effect(941) patient(846) }
{ patient(2837) hospit(1953) medic(668) }
{ group(2977) signific(1463) compar(1072) }
{ first(2504) two(1366) second(1323) }
{ framework(1458) process(801) describ(734) }
{ algorithm(1844) comput(1787) effici(935) }
{ care(1570) inform(1187) nurs(1089) }
{ search(2224) databas(1162) retriev(909) }
{ featur(1941) imag(1645) propos(1176) }
{ case(1353) use(1143) diagnosi(1136) }
{ model(2341) predict(2261) use(1141) }
{ state(1844) use(1261) util(961) }
{ detect(2391) sensit(1101) algorithm(908) }
{ model(3404) distribut(989) bayesian(671) }
{ can(774) often(719) complex(702) }
{ sequenc(1873) structur(1644) protein(1328) }
{ error(1145) method(1030) estim(1020) }
{ design(1359) user(1324) use(1319) }
{ risk(3053) factor(974) diseas(938) }
{ compound(1573) activ(1297) structur(1058) }
{ model(3480) simul(1196) paramet(876) }
{ activ(1138) subject(705) human(624) }
{ patient(1821) servic(1111) care(1106) }
{ can(981) present(881) function(850) }
{ high(1669) rate(1365) level(1280) }
{ cancer(2502) breast(956) screen(824) }
{ drug(1928) target(777) effect(648) }
{ result(1111) use(1088) new(759) }
{ method(1969) cluster(1462) data(1082) }
{ method(2212) result(1239) propos(1039) }
{ imag(1947) propos(1133) code(1026) }
{ data(1737) use(1416) pattern(1282) }
{ system(1976) rule(880) can(841) }
{ measur(2081) correl(1212) valu(896) }
{ imag(1057) registr(996) error(939) }
{ bind(1733) structur(1185) ligand(1036) }
{ method(1219) similar(1157) match(930) }
{ featur(3375) classif(2383) classifi(1994) }
{ imag(2830) propos(1344) filter(1198) }
{ network(2748) neural(1063) input(814) }
{ imag(2675) segment(2577) method(1081) }
{ take(945) account(800) differ(722) }
{ studi(2440) review(1878) systemat(933) }
{ motion(1329) object(1292) video(1091) }
{ assess(1506) score(1403) qualiti(1306) }
{ surgeri(1148) surgic(1085) robot(1054) }
{ problem(2511) optim(1539) algorithm(950) }
{ chang(1828) time(1643) increas(1301) }
{ learn(2355) train(1041) set(1003) }
{ concept(1167) ontolog(924) domain(897) }
{ clinic(1479) use(1117) guidelin(835) }
{ extract(1171) text(1153) clinic(932) }
{ method(1557) propos(1049) approach(1037) }
{ control(1307) perform(991) simul(935) }
{ model(2220) cell(1177) simul(1124) }
{ general(901) number(790) one(736) }
{ method(984) reconstruct(947) comput(926) }
{ howev(809) still(633) remain(590) }
{ studi(1410) differ(1259) use(1210) }
{ perform(999) metric(946) measur(919) }
{ research(1085) discuss(1038) issu(1018) }
{ system(1050) medic(1026) inform(1018) }
{ import(1318) role(1303) understand(862) }
{ visual(1396) interact(850) tool(830) }
{ perform(1367) use(1326) method(1137) }
{ studi(1119) effect(1106) posit(819) }
{ blood(1257) pressur(1144) flow(957) }
{ spatial(1525) area(1432) region(1030) }
{ record(1888) medic(1808) patient(1693) }
{ health(3367) inform(1360) care(1135) }
{ ehr(2073) health(1662) electron(1139) }
{ research(1218) medic(880) student(794) }
{ model(2656) set(1616) predict(1553) }
{ data(2317) use(1299) case(1017) }
{ signal(2180) analysi(812) frequenc(800) }
{ cost(1906) reduc(1198) effect(832) }
{ sampl(1606) size(1419) use(1276) }
{ gene(2352) biolog(1181) express(1162) }
{ time(1939) patient(1703) rate(768) }
{ use(2086) technolog(871) perceiv(783) }
{ analysi(2126) use(1163) compon(1037) }
{ health(1844) social(1437) communiti(874) }
{ structur(1116) can(940) graph(676) }
{ use(976) code(926) identifi(902) }
{ use(1733) differ(960) four(931) }
{ estim(2440) model(1874) function(577) }
{ decis(3086) make(1611) patient(1517) }
{ process(1125) use(805) approach(778) }
{ activ(1452) weight(1219) physic(1104) }

Resumo

CKGROUND: A UK Register of people with Multiple Sclerosis has been developed to address the need for an increased knowledge-base about MS. The Register is being populated via: a web-based portal; NHS neurology clinical systems; and administrative data sources. The data are de-identified and linked at the individual level. At the outset, it was not known whether people with MS would wish to participate in the UK MS Register by personally contributing their data to the Register via a web-based system. Therefore, the research aim of this work was to build an internet-mounted recruitment and consenting technology for people with Multiple Sclerosis, and to assess its feasibility as a questionnaire delivery platform to contribute data to the UK MS Register, by determining whether the information provided could be used to describe a cohort of people with MS.METHODS: The web portal was developed using VB.net and JQuery with a Microsoft SQL 2008 database. UK adults with MS can self-register and enter data about themselves by completing validated questionnaires. Descriptive statistics were used to characterise the respondents.RESULTS: The web portal was launched in May 2011, and in first three months 7,279 individuals registered on the portal. The ratio of men to women was 1:2.4 (n=5,899), the mean self-reported age at first symptoms was 33.8 (SD 10.5) years, and at diagnosis 39.6 (SD 10.3) years (n=4,401). The reported types of MS were: 15% primary progressive, 63% relapsing-remitting, 8% secondary progressive, and 14% unknown (n=5,400). These characteristics are similar to those of the prevalent MS population. Employment rates, sickness/disability rates, ethnicity and educational qualifications were compared with the general UK population. Information about the respondents' experience of early symptoms and the process of diagnosis, plus living arrangements are also reported.CONCLUSIONS: These initial findings from the MS Register portal demonstrate the feasibility of collecting data about people with MS via a web platform, and show that sufficient information can be gathered to characterise a cohort of people with MS. The innovative design of the UK MS register, bringing together three disparate sources of data, is creating a rich resource for research into this condition.

Resumo Limpo

ckground uk regist peopl multipl sclerosi develop address need increas knowledgebas ms regist popul via webbas portal nhs neurolog clinic system administr data sourc data deidentifi link individu level outset known whether peopl ms wish particip uk ms regist person contribut data regist via webbas system therefor research aim work build internetmount recruit consent technolog peopl multipl sclerosi assess feasibl questionnair deliveri platform contribut data uk ms regist determin whether inform provid use describ cohort peopl msmethod web portal develop use vbnet jqueri microsoft sql databas uk adult ms can selfregist enter data complet valid questionnair descript statist use characteris respondentsresult web portal launch may first three month individu regist portal ratio men women n mean selfreport age first symptom sd year diagnosi sd year n report type ms primari progress relapsingremit secondari progress unknown n characterist similar preval ms popul employ rate sicknessdis rate ethnic educ qualif compar general uk popul inform respond experi earli symptom process diagnosi plus live arrang also reportedconclus initi find ms regist portal demonstr feasibl collect data peopl ms via web platform show suffici inform can gather characteris cohort peopl ms innov design uk ms regist bring togeth three dispar sourc data creat rich resourc research condit

Resumos Similares

J. Med. Internet Res. - Keywords to recruit Spanish- and English-speaking participants: evidence from an online postpartum depression randomized controlled trial. ( 0,812423391578148 )
J. Med. Internet Res. - Predictors of retention in an online follow-up study of men who have sex with men. ( 0,80048929443415 )
J. Med. Internet Res. - Participants, usage, and use patterns of a web-based intervention for the prevention of depression within a randomized controlled trial. ( 0,797234942942963 )
J Innov Health Inform - Characteristics of electronic patient-provider messaging system utilisation in an urban health care organisation. ( 0,794825720086613 )
J. Med. Internet Res. - Type 1 diabetes eHealth psychoeducation: youth recruitment, participation, and satisfaction. ( 0,792450164114577 )
J. Med. Internet Res. - Dropout, nonusage attrition, and pretreatment predictors of nonusage attrition in a commercial Web-based weight loss program. ( 0,786718689738604 )
J. Med. Internet Res. - Do email and mobile phone prompts stimulate primary school children to reuse an Internet-delivered smoking prevention intervention? ( 0,785369426720003 )
J. Med. Internet Res. - The influence of user characteristics and a periodic email prompt on exposure to an internet-delivered computer-tailored lifestyle program. ( 0,784466678478005 )
J. Med. Internet Res. - Adherence to a web-based physical activity intervention for patients with knee and/or hip osteoarthritis: a mixed method study. ( 0,780112611680817 )
J. Med. Internet Res. - The effectiveness of loyalty rewards to promote the use of an Internet-based heart health program. ( 0,776942328728068 )
J. Med. Internet Res. - Determinants of follow-up participation in the Internet-based European influenza surveillance platform Influenzanet. ( 0,776504591185373 )
J. Med. Internet Res. - Individually tailored internet-based treatment for young adults and adults with panic attacks: randomized controlled trial. ( 0,77081401151361 )
J. Med. Internet Res. - How an online intervention to prevent excessive gestational weight gain is used and by whom: a randomized controlled process evaluation. ( 0,761617590812379 )
J Am Med Inform Assoc - Creation and implementation of a historical controls database from randomized clinical trials. ( 0,759155978211066 )
J. Med. Internet Res. - Effectiveness of web-based tailored advice on parents' child safety behaviors: randomized controlled trial. ( 0,756592203362417 )
J. Med. Internet Res. - Demographic, behavioral, and psychosocial correlates of using the website component of a worksite physical activity and healthy nutrition promotion program: a longitudinal study. ( 0,756161356468506 )
Telemed J E Health - Can an evidence-based book club intervention delivered via a tablet computer improve physical activity in middle-aged women? ( 0,753460476473169 )
J. Med. Internet Res. - Curbing alcohol use in male adults through computer generated personalized advice: randomized controlled trial. ( 0,75316449527483 )
Appl Clin Inform - Case report: patient portal versus telephone recruitment for a surgical research study. ( 0,750093144536161 )
BMC Med Inform Decis Mak - Process evaluation of a web-based intervention aimed at empowerment of disability benefit claimants. ( 0,74978240670151 )
J. Med. Internet Res. - Effectiveness of a Web-based tailored intervention (E-health4Uth) and consultation to promote adolescents' health: randomized controlled trial. ( 0,745745847675114 )
J. Med. Internet Res. - Effects of internet-based tailored advice on the use of cholesterol-lowering interventions: a randomized controlled trial. ( 0,744984685420634 )
J. Med. Internet Res. - Impact of seasonality on recruitment, retention, adherence, and outcomes in a web-based smoking cessation intervention: randomized controlled trial. ( 0,73873132401538 )
J Telemed Telecare - Randomized controlled feasibility trial of two telemedicine medication reminder systems for older adults with heart failure. ( 0,737887102484279 )
J. Med. Internet Res. - Efficacy of a Web-based computer-tailored smoking prevention intervention for Dutch adolescents: randomized controlled trial. ( 0,737290398055787 )
J. Med. Internet Res. - Comparison of trial participants and open access users of a web-based physical activity intervention regarding adherence, attrition, and repeated participation. ( 0,736559323589262 )
J. Med. Internet Res. - Effectiveness of a web-based brief alcohol intervention and added value of normative feedback in reducing underage drinking: a randomized controlled trial. ( 0,731806008762522 )
J. Med. Internet Res. - Prospective associations between intervention components and website engagement in a publicly available physical activity website: the case of 10,000 Steps Australia. ( 0,730387707657918 )
J. Med. Internet Res. - The effects of combining Web-based eHealth with telephone nurse case management for pediatric asthma control: a randomized controlled trial. ( 0,730154723866905 )
Int J Med Inform - Engagement in My Child's Asthma, an interactive web-based pediatric asthma management intervention. ( 0,729202414810824 )
J. Med. Internet Res. - Preventing smoking relapse via Web-based computer-tailored feedback: a randomized controlled trial. ( 0,728520071761787 )
J. Med. Internet Res. - A text messaging intervention to improve heart failure self-management after hospital discharge in a largely African-American population: before-after study. ( 0,728407324925946 )
J. Med. Internet Res. - A text messaging-based smoking cessation program for adult smokers: randomized controlled trial. ( 0,727273610452551 )
J Telemed Telecare - Attitudes of women in midlife to web-based interventions for promoting physical activity. ( 0,726021149308026 )
J. Med. Internet Res. - From online randomized controlled trials to participant preference studies: morphing the San Francisco Stop Smoking site into a worldwide smoking cessation resource. ( 0,725087700869401 )
J Am Med Inform Assoc - Increasing the response rate of text messaging data collection: a delayed randomized controlled trial. ( 0,724543970130992 )
J. Med. Internet Res. - The Sexunzipped trial: optimizing the design of online randomized controlled trials. ( 0,724038594065152 )
J Med Syst - Use of text-message reminders to improve participation in a population-based breast cancer screening program. ( 0,723962326010973 )
J. Med. Internet Res. - The ins and outs of an online bipolar education program: a study of program attrition. ( 0,72218845117067 )
J. Med. Internet Res. - Partnership for health-2, a web-based versus print smoking cessation intervention for childhood and young adult cancer survivors: randomized comparative effectiveness study. ( 0,719321659464555 )
J. Med. Internet Res. - Web-based intervention to promote physical activity by sedentary older adults: randomized controlled trial. ( 0,719253355324605 )
J. Med. Internet Res. - A theory-based video messaging mobile phone intervention for smoking cessation: randomized controlled trial. ( 0,716509215810555 )
J. Med. Internet Res. - Novel technologies for assessing dietary intake: evaluating the usability of a mobile telephone food record among adults and adolescents. ( 0,716450426357556 )
BMC Med Inform Decis Mak - Effects of and satisfaction with short message service reminders for patient medication adherence: a randomized controlled study. ( 0,714081143880058 )
J. Med. Internet Res. - Initial outcomes from a 4-week follow-up study of the Text4baby program in the military women's population: randomized controlled trial. ( 0,713522791169659 )
J. Med. Internet Res. - Use of a text message program to raise type 2 diabetes risk awareness and promote health behavior change (part I): assessment of participant reach and adoption. ( 0,712970591806169 )
J. Med. Internet Res. - Initial and sustained participation in an internet-delivered long-term worksite health promotion program on physical activity and nutrition. ( 0,712795627363185 )
J. Med. Internet Res. - Effectiveness of a Web-based multiple tailored smoking cessation program: a randomized controlled trial among Dutch adult smokers. ( 0,711728139487435 )
J. Med. Internet Res. - Web-enhanced tobacco tactics with telephone support versus 1-800-QUIT-NOW telephone line intervention for operating engineers: randomized controlled trial. ( 0,710965746967561 )
Telemed J E Health - Effectiveness of healthy relationships video-group-A videoconferencing group intervention for women living with HIV: preliminary findings from a randomized controlled trial. ( 0,708871832475863 )
J. Med. Internet Res. - Engagement and retention: measuring breadth and depth of participant use of an online intervention. ( 0,706474619077728 )
Int J Med Inform - Results of a randomized controlled trial to assess the effects of a mobile SMS-based intervention on treatment adherence in HIV/AIDS-infected Brazilian women and impressions and satisfaction with respect to incoming messages. ( 0,706268459237189 )
Telemed J E Health - Effectiveness of home telehealth in comorbid diabetes and hypertension: a randomized, controlled trial. ( 0,70599018151925 )
J. Med. Internet Res. - Text messaging data collection for monitoring an infant feeding intervention program in rural China: feasibility study. ( 0,705822332710891 )
J. Med. Internet Res. - Short-term effectiveness of web-based guided self-help for phobic outpatients: randomized controlled trial. ( 0,703600371666763 )
J. Med. Internet Res. - Who participates in Web-assisted tobacco interventions? The QUIT-PRIMO and National Dental Practice-Based Research Network Hi-Quit studies. ( 0,701308717484753 )
J. Med. Internet Res. - Effects of a Web-based tailored intervention to reduce alcohol consumption in adults: randomized controlled trial. ( 0,70126150572057 )
J Telemed Telecare - A pilot programme using mobile phones for HIV prevention. ( 0,699142657330459 )
J. Med. Internet Res. - Effect of tailoring in an internet-based intervention for smoking cessation: randomized controlled trial. ( 0,698287174198251 )
J. Med. Internet Res. - Improving adherence to antiretroviral therapy for youth living with HIV/AIDS: a pilot study using personalized, interactive, daily text message reminders. ( 0,69730947743461 )
Telemed J E Health - Evaluating opportunities for text message communication: a survey of parents and teens. ( 0,697304213691642 )
J. Med. Internet Res. - Comparison of text and video computer-tailored interventions for smoking cessation: randomized controlled trial. ( 0,696439603491994 )
J. Med. Internet Res. - Participant profiles according to recruitment source in a large Web-based prospective study: experience from the Nutrinet-Sant? study. ( 0,695944421020959 )
J Telemed Telecare - Use of mobile phone text messaging to deliver an individualized smoking behaviour intervention in Chinese adolescents. ( 0,695136776017144 )
J. Med. Internet Res. - Evaluation of a Web-based intervention to promote hand hygiene: exploratory randomized controlled trial. ( 0,694508353824788 )
Med Decis Making - Participation in cancer clinical trials: why are patients not participating? ( 0,69439138879926 )
BMC Med Inform Decis Mak - A cohort study of a tailored web intervention for preconception care. ( 0,694278438875972 )
J. Med. Internet Res. - Providing web-based feedback and social norms information to reduce student alcohol intake: a multisite investigation. ( 0,693621931562407 )
J. Med. Internet Res. - Cardiovascular health effects of internet-based encouragements to do daily workplace stair-walks: randomized controlled trial. ( 0,689108994106121 )
J. Med. Internet Res. - Surviving and thriving with cancer using a Web-based health behavior change intervention: randomized controlled trial. ( 0,688987886956248 )
J. Med. Internet Res. - Internet based computer tailored feedback on sunscreen use. ( 0,685736385014098 )
J Telemed Telecare - The effect of SMS messaging on the compliance with iron supplementation among pregnant women in Iran: a randomized controlled trial. ( 0,685269086442307 )
J. Med. Internet Res. - Internet-based recruitment to a depression prevention intervention: lessons from the Mood Memos study. ( 0,685039211773258 )
J Telemed Telecare - Tailored mobile phone text messages as an adjunct to obesity treatment for adolescents. ( 0,68437593345033 )
J. Med. Internet Res. - Adherence to self-monitoring via interactive voice response technology in an eHealth intervention targeting weight gain prevention among Black women: randomized controlled trial. ( 0,683409271178727 )
Telemed J E Health - Increasing access to chronic disease self-management programs in rural and remote communities using telehealth. ( 0,680581109117371 )
J. Med. Internet Res. - Effectiveness of a Web-based intervention aimed at healthy dietary and physical activity behavior: a randomized controlled trial about users and usage. ( 0,680456195314211 )
J. Med. Internet Res. - Predictors of participant retention in a guided online self-help program for university students: prospective cohort study. ( 0,677730683934102 )
J. Med. Internet Res. - Effectiveness of a web-based physical activity intervention in patients with knee and/or hip osteoarthritis: randomized controlled trial. ( 0,677474863404947 )
J. Med. Internet Res. - Effects of a guided web-based smoking cessation program with telephone counseling: a cluster randomized controlled trial. ( 0,67723681242015 )
J. Med. Internet Res. - Diabetes self-management smartphone application for adults with type 1 diabetes: randomized controlled trial. ( 0,677027805055878 )
J Telemed Telecare - Personalised electronic messages to improve sun protection in young adults. ( 0,676234589968585 )
J. Med. Internet Res. - Program completion of a web-based tailored lifestyle intervention for adults: differences between a sequential and a simultaneous approach. ( 0,674196794647646 )
J. Med. Internet Res. - Prevention of generalized anxiety disorder using a web intervention, iChill: randomized controlled trial. ( 0,67368005102883 )
J. Med. Internet Res. - Web-based cognitive behavioral self-help intervention to reduce cocaine consumption in problematic cocaine users: randomized controlled trial. ( 0,673583493661628 )
Telemed J E Health - TEAhM-Technologies for Enhancing Access to Health Management: a pilot study of community-based telehealth. ( 0,673119549889737 )
J. Med. Internet Res. - Efficacy of a text message-based smoking cessation intervention for young people: a cluster randomized controlled trial. ( 0,672961983071657 )
J. Med. Internet Res. - Attrition in web-based treatment for problem drinkers. ( 0,672650182742293 )
J. Med. Internet Res. - Tailored system to deliver behavioral intervention and manage data in randomized trials. ( 0,671512295162773 )
J. Med. Internet Res. - Development and preliminary evaluation of an internet-based healthy eating program: randomized controlled trial. ( 0,671157681852624 )
J. Med. Internet Res. - Changes in depressive symptoms, social support, and loneliness over 1 year after a minimum 3-month videoconference program for older nursing home residents. ( 0,669850265415318 )
Telemed J E Health - Delivering laboratory results by text message and e-mail: a survey of factors associated with conceptual acceptability among STD clinic attendees. ( 0,669677817705746 )
J Telemed Telecare - The effect of psychosocial interventions delivered by telephone and videophone on quality of life in early-stage breast cancer survivors and their supportive partners. ( 0,669434444057406 )
J Am Med Inform Assoc - Evaluating adherence to the International Committee of Medical Journal Editors' policy of mandatory, timely clinical trial registration. ( 0,669384894761045 )
J. Med. Internet Res. - Adherence to a smartphone application for weight loss compared to website and paper diary: pilot randomized controlled trial. ( 0,667515773029347 )
J. Med. Internet Res. - Considerations for community-based mHealth initiatives: insights from three Beacon Communities. ( 0,66738583075743 )
J. Med. Internet Res. - Mobile phone text messaging intervention for cervical cancer screening: changes in knowledge and behavior pre-post intervention. ( 0,666486899319771 )
J. Med. Internet Res. - Periodic email prompts to re-use an internet-delivered computer-tailored lifestyle program: influence of prompt content and timing. ( 0,665167232870677 )
J. Med. Internet Res. - Effectiveness of Web-based versus face-to-face delivery of education in prescription of falls-prevention exercise to health professionals: randomized trial. ( 0,664945652357139 )
J. Med. Internet Res. - Internal versus external motivation in referral of primary care patients with depression to an internet support group: randomized controlled trial. ( 0,664548082197674 )