Al-Shahi, R

Warlow, C P

Will, R G

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     Edinburgh Research Explorer                                      Amount of research interest in rare and common neurologicalconditionsCitation for published version:Al-Shahi, R, Will, RG & Warlow, CP 2001, 'Amount of research interest in rare and common neurologicalconditions: bibliometric study' BMJ, vol 323, no. 7327, pp. 1461-2.Link:Link to publication record in Edinburgh Research ExplorerDocument Version:Publisher's PDF, also known as Version of recordPublished In:BMJPublisher Rights Statement:Creative Commons Attribution License or Creative Commons Attribution Non-Commercial License available(depending on requirement of funding agency)General rightsCopyright for the publications made accessible via the Edinburgh Research Explorer is retained by the author(s)and / or other copyright owners and it is a condition of accessing these publications that users recognise andabide by the legal requirements associated with these rights.Take down policyThe University of Edinburgh has made every reasonable effort to ensure that Edinburgh Research Explorercontent complies with UK legislation. If you believe that the public display of this file breaches copyright pleasecontact openaccess@ed.ac.uk providing details, and we will remove access to the work immediately andinvestigate your claim.Download date: 28. Apr. 2017article and revising it critically [and] final approval” ofthe paper.2 Would it not be fairer for medical journalsto publish a formula that links the order of authorshipexplicitly to the extent of contributorship, rather thanrely on authors’ informal decisions?Contributors: RC conceived the idea and design of the study,contributed to the interpretation of the data, and drafted thearticle. EB contributed to the design, led on the analysis, andcritically revised the article. SC contributed to the design,collected the data, and approved the manuscript of the article.RC acts as guarantor for the paper.Funding: No external funding.Competing interests: None declared.1 Larry Adler [obituary]. Week 2001 Aug 18:32.2 BMJ. Advice to authors and contributors. bmj.com/advice/ (accessedAug 2001)3 Smith R. Authorship is dying: long live contributorship. BMJ 1997;315:696.4 Lancet. Writing for the Lancet. www.Lancet.com/authorinfo (accessedAug 2001).Amount of research interest in rare and commonneurological conditions: bibliometric studyRustam Al›Shahi, Robert G Will, Charles P WarlowNeurologists are often accused of being interested inonly rare incurable diseases. Although this may havebeen true in the past, today’s neurologists claim to bemore concerned with common disorders—but arethey really?Methods and resultsWe derived a “publication ratio” to measure the amountof research interest in 44 conditions representative ofthe spectrum of neurological disorders, for which thereare population based estimates of frequency.1 Wedivided the number of Medline papers published in1998 about each condition (in which their MeSH termwas the focus of the paper) by a measure of theirfrequency (incidence or prevalence) × 100 000. Whencounting the number of publications, the investigator(RAS) was blinded to the frequency of each disease.Far more papers investigated rare as opposed tocommon neurological disorders when the relative fre›quencies of the diseases were taken into consideration(figure). For example, the publication ratio for variantCreutzfeldt›Jakob disease (incidence 0.02 per 100 000per year) was more than 100›fold greater than forstroke and transient ischaemic attack (combinedincidence 250 per 100 000 per year), and thepublication ratio for Wilson’s disease (prevalence 0.4per 100 000) was approximately 6000›fold greaterthan for migraine (prevalence 10 000 per 100 000).Although there was a shortfall in research into morecommon neurological disorders, doctors interested inthem might not welcome publication ratios equivalentto those for rarer disorders. Overall, there were 42papers about variant Creutzfeldt›Jakob disease and4562 about stroke and transient ischaemic attack. If thepublication ratio for stroke and transient ischaemicattack had been equal to that of variant Creutzfeldt›Jakob disease, clinicians and researchers interested instroke would have had to read 525 000 papers in 1998(about 10 000 per week)—an insufferable burden!CommentThe research interest in rare neurological conditions isdisproportionately larger than that in common condi›tions. Our results support a change in the focus ofmedical research towards the most common condi›tions that are responsible for the greatest disability,death, economic hardship, and loss of quality of life. Itis recognised that funding for research into a diseaseshould be proportional to that disease’s burden onsociety2; however, conditions that account for 90% ofthe global burden of disease receive less than one tenthof the world’s health budget.3Stroke and transient ischaemic attackCarpal tunnel syndromePrimary brain tumourSecondary brain tumourSubarachnoid haemorrhageTemporal arteritisTrigeminal neuralgiaMeningococcal meningitisArteriovenous malformationNeuralgic amyotrophyGuillain-Barré syndromeMotor neurone diseaseBenign intracranial hypertensionPolymyositis and dermatomyositisMultisystem atrophyPneumococcal meningitisGilles de la Tourette syndromeHerpes simplex encephalitisTetanusSporadic Creutzfeldt-Jakob diseaseSubacute sclerosing panencephalitisVariant Creutzfeldt-Jakob diseaseMigraineChronic tension headacheAlzheimer's diseaseActive epilepsyEssential tremorChronic fatigue syndromeMultiple sclerosisParkinson's diseaseCluster headacheNeurofibromatosisHemifacial spasmNarcolepsy syndromeMyasthenia gravisHuntington's diseaseSyringomyeliaMyotonic dystrophyDuchenne muscular dystrophyFacioscapulohumeral dystrophyMitochondrial cytopathyProgressive supranuclear palsyTuberous sclerosisWilson's disease0 500 1000 1500 2000 25000 50 100 150Increasing prevalence200 250Publication ratioIncreasing incidencePublication ratios for 44 neurological conditions ordered by their incidence (top) andprevalence (bottom)Publish and be damnedCorrespondence to:C P WarlowCharles.Warlow@ed.ac.ukcontinued overBMJ 2001;323:1461–21461BMJ VOLUME 323 22–29 DECEMBER 2001 bmj.comAlthough our results are striking, the crudepublication ratio has limitations. The size of thenumerator depends on the proportion of papersindexed in Medline, and Medline’s accuracy dependson correct identification of publications that focus onthe disease of interest. We made no assessment of thequality of the identified publications. We would havecalculated a “controlled trials ratio” were it not for thelow specificity of the Cochrane controlled trials register(many studies within it are not controlled trials). Wechose the best available data on disease frequency,1although the quality of such data is often imperfect.We could have chosen to compare research interestwith measures of disease burden other than thenumber of people affected.4 For example, mortality,years of life lost, and disability adjusted life years corre›late with funding by the National Institutes of Health ofresearch into a selection of diseases in industrialisedcountries.2 Incidence, prevalence, and hospitalinpatient days do not show such a correlation.Some doctors might justify the lower interest incommon conditions on the grounds that theiraetiology, prognosis, and treatment are better defined.This is not true for many common neurologicalillnesses—the greatest good for the greatest number isnot being achieved. With consumers becomingincreasingly involved in research, the public mightexpect a more utilitarian approach.5Some of the differences we have observed might beexcused by the political, economic, and scientific inter›est surrounding some diseases. However, we suspectthat part of the explanation is also to do with the fash›ionable nature of some conditions, the availability ofresearch funding, and the character of neurologiststhemselves. Are other specialists any different? Perhapsthey too should examine their track records.Contributors: RAS and CPW designed the study and collectedthe data. All authors contributed to the analysis, interpretation,and writing of the paper. CPW is the guarantor.Funding: RAS was funded by a Medical Research Councilclinical training fellowship.Competing interests: The research interests of the authorsare stroke (RAS and CPW) and Creutzfeldt›Jakob disease(RGW) and, of course, they are all neurologists.1 Warlow CP. The frequency of neurological diseases. In: Donaghy M, ed.Brain’s diseases of the nervous system. 11th ed. Oxford: Oxford UniversityPress, 2001.2 Gross CP, Anderson GF, Powe NR. The relation between funding by thenational institutes of health and the burden of disease. N Engl J Med1999;340:1881›7.3 The 10/90 report on health research. Geneva: Global Forum for HealthResearch, 2000.4 Frankel MA. The natural history of waiting lists—some widerexplanations for an unnecessary problem. Health Trends 1989;21:56›8.5 Tallon D, Chard J, Dieppe P. Relation between agendas of the researchcommunity and the research consumer. Lancet 2000;355:2037›40.Wanted—more answers than questions: literature reviewAnthony S DavidThe purpose of medical research is to advanceknowledge and solve clinical problems. These highideals are difficult to achieve. Instead, academiasometimes draws criticism for apparently doingresearch for its own sake. I therefore carried out asystematic literature review to examine whetherpublished research was providing more questions thananswers, or vice versa.Methods and resultsI used “more questions than answers” as a search term inthe Medline database, spanning from 1966 to March2001. To limit the potential number of hits, only the titleand abstract were used as search fields. I also searchedon the phrase “more answers than questions.” All articletypes were included if they had an English abstract.Two terms occurred in 166 articles (reference listavailable on request). However, only three articles(0.018%) purported to describe more answers thanquestions. Of the remaining 163, 119 used the term inthe title and 13 prefixed the phrase with the word “still.”No article suggested an equal number of answers andquestions. Had the prevalence of answers to questionsbeen a matter of chance, each search term would haveyielded 83 articles (95% confidence interval 70 to 97);hence the finding is highly significant (P < 0.001,binomial test).The articles seem to be evenly distributed betweenbasic science and clinical publications. The journalsranged from the Acta Gastroenterologica Belgica toZeitschrift für Gastroenterologie (but gastroenterologistswere not over›represented). I also tested a secondaryPublish and be damnedInstitute ofPsychiatry andGuy’s, King’sCollege, andSt Thomas’s Schoolof Medicine,London SE5 8AFAnthony S Davidprofessora.david@iop.kcl.ac.ukBMJ 2001;323:1462–3UniversityDepartment ofClinicalNeurosciences,Western GeneralHospital, EdinburghEH4 2XURustam Al›ShahiMRC clinical trainingfellowRobert G Willprofessor of clinicalneurologyCharles P Warlowprofessor of medicalneurology1462 BMJ VOLUME 323 22–29 DECEMBER 2001 bmj.com

Amount of research interest in rare and common neurological conditions:bibliometric study

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