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Patient Registries in Cognitive Neuroscience Research: Advantages ...

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Patient Registries in Cognitive Neuroscience Research: Advantages ... Patient Registries in Cognitive Neuroscience Research: Advantages ... Document Transcript

  • Patient Registries in Cognitive Neuroscience Research: Advantages, Challenges, and Practical Advice Lesley K. Fellows1, Marianna Stark2, Arlene Berg1, and Anjan Chatterjee2Abstract& Neuropsychological work is the historical foundation of cog- research participants, and on subsequent data management.nitive neuroscience and continues to be an important method in Shared, centrally managed research registries provide a frame-the study of the neural basis of human behavior, complementing work for facilitating access to this method for nonclinicians, ad-newer techniques for investigating brain structure–function rela- dressing ethical concerns, streamlining recruitment and screeningtionships in human subjects. Recent advances in neuroimag- procedures, and coordinating subsequent research contacts anding, statistics and information management provide powerful data storage. We report the experience of two such registries: thetools to support neuropsychological research. At the same time, patient database of the Center for Cognitive Neuroscience at thechanging ethical requirements and privacy concerns impose in- University of Pennsylvania, and the Cognitive Neuroscience Re-creasingly high standards on the procedures used to recruit search Registry at McGill University. &INTRODUCTION Finally, although the type of patient-based work de-The scientific study of human brain–behavior relation- scribed here aims to address basic science questions, itships began in the clinic. The initial insights into the is also a naturally ‘‘translational’’ method: The results ofneural underpinnings of the major areas of human cog- such studies often have immediate applicability in clin-nition came first from observation, and then from exper- ical settings.imental investigation of the effects of brain injury on Human lesion studies have certain strengths, but theybehavior. Such work has provided a framework both for also have important limitations. Some of these limita-parsing complex behaviors and for understanding how tions are of a theoretical and inferential nature, and arethey relate to the brain (Chatterjee, 2005). Although this intrinsic to the method (Farah, 1994; Shallice, 1988).methodology can be traced back to the mid 19th cen- Many others are practical, and so potentially address-tury, it remains a foundation for cognitive neuroscience able. Perhaps the major practical limitation is havingin the new millenium. access to appropriate patients with damage involving The advent of other methods, particularly functional brain areas of interest, and relatedly, recruiting anneuroimaging, has changed the landscape of cognitive adequate number of patients to provide the necessaryneuroscience dramatically (Fellows et al., 2005), leading statistical power for group studies.some to muse in print about the continued relevance of Increasingly strict ethical and privacy regulations haveexperimental neuropsychology (Rorden & Karnath, added a new set of practical challenges to the back-2004). As we and others have pointed out, lesion studies ground difficulties inherent in the study of patients withhave particular inferential strengths that make them a brain injury. Changing societal views have, on the onevital complement to correlational methods such as hand, led to increasingly tight restrictions on who mayfunctional neuroimaging (Fellows et al., 2005; Rorden view an individual’s medical record, or otherwise have& Karnath, 2004). As a loss-of-function method, lesion access to medical information. On the other hand, medi-work can test whether a given region of the brain is cal paternalism has been replaced by patient-centerednecessary for a particular process. The dissociability of medicine, which emphasizes the patient’s central, au-deficits after brain injury can also shed light on the tonomous role as decision-maker in clinical and, bycomponent processes that make up a complex behavior. extension, medical research settings. Related changes in human research ethics place restrictions on how personal information collected for research purposes1 McGill University, 2University of Pennsylvania may be used. Typically, for example, explicit consent isD 2008 Massachusetts Institute of Technology Journal of Cognitive Neuroscience 20:6, pp. 1107–1113
  • needed for so-called secondary use of data that were Table 1. Current Challenges for Human Lesion Studiesoriginally collected for a different purpose. Accessibility As these societal, legal, and ethical changes haveoccurred, medical practice has also changed. Hospital Making patient-based research methods available tostays are brief, patient care is more fragmented, and the nonclinicianspatient populations being cared for in tertiary academic Autonomymedical centers are increasingly complex, often with Putting participants at the center of research participationcomorbidities or atypical features that make these pa- decisionstients less suitable for basic research. Over about the same time frame, there have been Information managementmajor advances in anatomical neuroimaging, image anal- Respecting modern privacy policiesysis, statistical methods, and databasing, which have the Ethicspotential to dramatically enhance what can be learnedfrom traditional lesion studies. Hand-drawn sketches of Recruiting while respecting confidentiality rules, specifyingbrain injuries are being replaced by digital image pro- uses of collected datacessing techniques that facilitate increasingly sophisti- Efficiencycated analyses of brain structure–function relationships Harnessing information technologies to optimize data(Rorden, Karnath, & Bonilha, 2007; Rorden & Karnath, management2004; Bates, Appelbaum, Salcedo, Saygin, & Pizzamiglio,2003; Bates, Wilson, et al., 2003; Rorden & Brett, 2000). ScaleMagnetic resonance imaging techniques can provide not Achieving an adequate sample size to support modern imageonly very detailed delineation of chronic brain injury but analysis techniques, and to study behaviors with largealso information about acute, and even transient, path- individual differences in the normal populationological changes in brain function that can be linked to Sustainabilitychanges in behavior (Hillis, 2007; Ashburner & Friston,2000). These data can be readily stored and manipulated Investing in infrastructure and personnel, and establishingin digital form, and easily linked to behavioral, clinical, recruitment and retention procedures that can be sustained over the long time frame required for such workand demographic measures in database form. In summary, human lesion studies remain a vital pillarof cognitive neuroscience in the 21st century, and mod-ern imaging, statistical, and data management methods both cases, happens to be a neurologist. There arecan address some of the practical challenges of this advantages to the person in the supervisory role beingwork. However, the fundamental challenge of partici- a clinician, preferably in the clinical neurosciences: Suchpant recruitment and access remains, and modern ethics a position facilitates communication with other referringand privacy considerations add further constraints. physicians (most often neurologists, neurosurgeons andHere, we describe a research registry system designed physiatrists). Residents are also more likely to alert theto efficiently address this challenge; similar responses to database coordinator about relevant cases when theythese constraints have been reported in support of have an already-established relationship with the super-clinical neuropsychological research (Schwartz, Brecher, vising clinician.Whyte, & Klein, 2005). The registry system provides an The coordinator’s duties include identifying and sub-organizational structure; a set of recruitment, access, sequently recruiting potential research participants, ob-and retention procedures; and a data management taining informed consent for their participation in theframework to support cognitive neuroscience research registry, and then gathering the relevant backgroundin brain-injured participants. We describe the implemen- information about these participants, including per-tation of this system at the University of Pennsylvania forming a screening neuropsychological evaluation and(UPenn) and McGill University, and discuss the advan- accessing available clinical neuroimaging. These data aretages and drawbacks of this approach (Table 1). maintained in a computerized database. Only the coor- dinator has access to identifying and contact informa- tion. Individual investigators can view a more limited setREGISTRY ORGANIZATION of information within the database (e.g., lesion location,The structure of both registries is similar because the basic demographic and clinical information, results ofMcGill registry was modeled on the one developed at screening tests) in order to select potential candidatesthe UPenn’s Center for Cognitive Neuroscience. Both for a specific research project. The coordinator serves asare conceived of as a shared research resource. The the contact point between investigators and registrylinchpin of the organizational framework is a dedicated participants. She or he informs the registry participantcoordinator who plays a variety of roles. The coordinator of the opportunity to participate in a particular study. Ifis, in turn, supervised by a clinician–researcher, who, in the patient is interested, the coordinator then arranges1108 Journal of Cognitive Neuroscience Volume 20, Number 6
  • the study visit with the investigator and maintains records currently enrolls children younger than 18 years, thisabout the frequency and duration of study visits, and, in population also requires particular attention to ethicalgeneral terms, the nature of the study. and consent issues. The coordinator’s ‘‘go-between’’ role serves several The possibility of using such registries as recruitmentcrucial functions. First, it protects the privacy of registry sources for treatment studies raises an interesting issue:participants to the fullest extent possible. Investigators If the treatment has a measurable effect on performance,have access only to anonymized clinical information then the participants would be different from other,until the point the patient agrees to participate in their untreated registry members, presumably making themstudy. Second, it improves the informed consent pro- ineligible for participation in future basic research stud-cess by reducing the likelihood of coercion: The person ies. Treatment studies may also place greater demandsobtaining initial consent for participation in a given on patients in terms of time and effort, and potentiallystudy is the coordinator, a (relatively) neutral party, expose them to greater risk, all of which might influencerather than the investigator or the patient’s personal their ability or willingness to participate in basic re-physician. Third, it puts a human face on what might search. On the other hand, patients may be more willingotherwise be a rather soulless bureaucratic mechanism to be listed in the registry if it means they will have thefor tracking research subjects. Patients get to know the opportunity to participate in treatment trials. Given thecoordinator, and vice versa. Among other benefits, this limited state of current treatments for cognitive impair-relationship allows the coordinator to gauge the appro- ments after brain injury, these are relatively minor con-priate intensity of a given participant’s involvement in cerns at the moment, but they may well become moreresearch. This is done explicitly by asking how often a important considerations in the medium term.patient is willing to be contacted, and implicitly, by being A further question to consider when planning a registrysensitive to changes in their life circumstances and to is how wide a range of investigators will have access to it.the kinds of demands that might be placed on individual Is it open to a specific list of researchers, to those affiliatedparticipants if they meet inclusion criteria for several with a specific institution or center, or to any researcherongoing investigations. anywhere in the world? Currently, both registries de- scribed here limit access to those affiliated with the center or institution at which they are based. Access by nonaffil-ETHICAL CONSIDERATIONS iated researchers can be undertaken in collaboration.The registry is not a research project, but rather, a tool This has the advantage of more-or-less capping the in-to support research projects. Consequently, the consent tensity of database use, and means that the same institu-document describes in very general terms the kinds of tional review board will approve individual studies.research that registry participants may become involved Although the registry is primarily a research supportin, and focuses instead on what kind of information will tool, as the database associated with it grows, it maybe collected in the registry, who will have access to that become a resource for research in its own right. That is,information, and how that information will be used. In research questions could be answered by analysis of theestablishing such a registry, it may be important to data routinely collected about registry participants. Twoconsider how wide a range future projects may cover, steps need to be taken to permit this to occur: First,particularly in terms of the demands placed on partic- consent documents must make clear that the dataipants. Will future projects be limited to noninvasive collected may be used for this purpose in the future,behavioral studies, or are functional imaging, event- the so-called ‘‘secondary use.’’ Second, it may be worthrelated potential, transcranial magnetic stimulation, or thinking about potential secondary-use applicationsgenetic studies also possibilities? What about treatment when deciding which clinical, demographic, and neuro-studies? Local institutional review boards may require psychological information to acquire.that this full range be specified in detail during the A final consideration for the consent process is ger-consent process, or that participants be asked to indi- mane both to the registry consent, and the consentcate their willingness to be contacted for different kinds documents for the individual research studies that willof studies. It is important to be clear (both to partic- draw participants from the registry. This relates to theipants and to ethics oversight committees) that registry direction of information flow between the registry data-participants are consenting only to be informed about base and individual research projects. Various modelsfuture research opportunities, and are completely free are possible: At one extreme, researchers draw informa-to accept or decline participation in any particular study. tion from the registry, and return only the minimum Participants with brain damage may have difficulty information needed for smooth functioning of the reg-providing fully informed consent due to the very cogni- istry service, such as the frequency and duration of antive deficits that make them eligible for participation, individual’s participation in a particular study. At theand these issues need to be addressed in compliance other, all data collected in the course of all experimentswith the standards of the local institutional review completed by a given participant are eventually linkedboard. Although neither of the registries described here back to the registry database. The latter model would Fellows et al. 1109
  • provide a particularly rich dataset for secondary-use istry, this form of investigator-initiated recruitment willpurposes. Currently, both registries function somewhere result in a particularly rich and relevant resource over time.between these extremes. Individual investigators return This flexibility means that patient recruitment in bothinformation to the database about the experimental databases does not follow rigid inclusion and exclusiontasks they have administered. If these included standard rules: Recruitment can be syndrome-based in one areameasures that might be useful to other researchers in (e.g., McGill’s registry recruits patients with acquiredthe future, these results are added to the database. Of aphasia, regardless of lesion site or sites), and neuro-course, this requires that the researcher obtain consent anatomically driven in another (e.g., identifying patientsfor this type of data sharing. Finally, addition of informal with damage to a specific region within the frontal lobe,observations made by individual investigators to the regardless of clinical symptoms). Similarly, patients areprimary database can be extremely useful. For example, generally included in the registries even if they meetnoting that a particular participant fatigues quickly is what might be considered ‘‘relative’’ exclusion criteriahelpful in planning subsequent studies. (e.g., a past history of drug or alcohol abuse, or of depression). This information is flagged in the database, and investigators can then decide for themselves if aRECRUITMENT given patient is eligible for a particular study. ThisPotential participants can be identified in a variety of heterogeneity of inclusion and exclusion criteria is theways, limited primarily by privacy considerations. Clini- practical result of meeting the needs of many investi-cian referral is the main mechanism of recruitment at gators. It is worth noting that this lack of consistencyboth sites. Clinicians who care for patient populations of may have implications for secondary-use studies, de-potential interest (such as stroke, tumor, surgically pending on their specific designs.treated epilepsy) are asked to mention the registry to Recruitment is the rate-limiting step in the develop-appropriate patients, and if the patients are interested in ment and use of such registries. It requires sustainedhearing more about the program, to pass their contact effort and takes time. A sense of the expected time courseinformation to the registry coordinator. Where confiden- can be gained from Figure 1, which shows accrual to bothtiality policies permit, this process is facilitated by having registries since their inceptions. This figure shows onlythe coordinator screen charts, generate a list of patients those subjects actually enrolled in the database, com-who might be candidates, and then provide that list to prising the 10–20% of potential participants who arethe relevant clinicians to aid in the recruitment process. found to be eligible, interested, and available to partici-A brochure explaining the registry can also be a helpful pate. Thus, for every patient enrolled in each registry, 5 torecruitment aid; this is often sent to patients after the 10 more were identified as possible candidates, but ex-initial telephone contact. cluded at various stages of the screening process. The focus of recruitment will vary across registries,and over time, depending on the needs of the inves- RETENTIONtigators making use of the registry. This situation canbecome a counterproductive vicious circle if a potential Given the ‘‘front end’’ investment of time and resourcesuser queries the database, finds few subjects appropriate in recruiting patients, once they are enrolled in thefor their planned study, and so abandons the study. This registry, minimizing dropout becomes crucial. We haveprevents a specific study from being carried out, but also identified a number of factors that seem to be importantmakes it unlikely that future work in that area will beattempted. Both registries encourage a more construc-tive approach, in which the recruitment mechanisms areadjusted to support the specific project. This works bestwhen it is interactive: when the researcher specifies thepatient population of interest, but also works with thecoordinator (often in conjunction with the neurologistsupervising the registry) to determine how that popula-tion can be accessed. Clearly, this process is morecumbersome than when appropriate patients are alreadylisted in the registry, but it still has advantages over thead hoc recruitment methods that would have been usedto solve this problem in the past. First, the registryprovides an experienced person as well as establishedprocedures to undertake the recruitment, and second,the process will result in a new population being addedto the registry, facilitating future research in this area. In- Figure 1. Cumulative recruitment into the UPenn (solid line) anddeed, where multiple investigators make use of the reg- McGill (dashed line) registries since inception, by year.1110 Journal of Cognitive Neuroscience Volume 20, Number 6
  • in this regard. As mentioned, the relationship between registry, allowing investigators to select their studythe patients and the database coordinator puts a human population precisely, cutting down on the backgroundface to the process, which we suspect is a critical factor. evaluations that need to be done as part of a particularThis connection is strengthened through intermittent study, and enhancing the registry database’s secondarycontact with all registry participants, including those use capabilities. On the other hand, longer screeningwho may not have recently participated in any specific takes additional time, effort, and money, and with thestudy, such as through holiday cards. best of intentions, may still not meet the requirements Continuity of the coordinator position is important of particular studies. Furthermore, all registry partici-here; this is not a position to fill with a series of tem- pants undergo screening, but only a subset will actuallyporary employees, or part-time student help. In addi- participate in further research, making intensive screen-tion, clearly explaining the purpose of this kind of ing assessments potentially inefficient.research breeds loyalty to the enterprise. When patients Both registries described here compromise with a rel-understand the contribution they are making, they are atively brief intake session, which includes consent, col-often remarkably generous with their time and effort. lection of demographic and medical information, details(This is perhaps particularly the case when patients are of the neurological history, and a screening neurological/no longer able to carry out their usual occupational or neuropsychological assessment. At UPenn, the main in-social roles because of their brain injury.) The purpose strument has been the Mattis dementia rating scale,of the research can be made concrete by providing which provides a brief (and standardized) assessment ofintermittent summaries of the research being done major cognitive domains, although one that is not partic-through the registry. At UPenn, a biannual newsletter ularly specific for the deficits commonly seen after focalis sent to all registry participants. The newsletter pro- brain injury. A new battery, the Philadelphia Brief Assess-vides an update on recent findings, publications and ment of Cognition (PBAC), is under development and willpresentations, profiles of the investigators involved, and be used as the screening instrument. At McGill, a com-information about ongoing projects. Feedback about puterized screening battery is being piloted, intended tothis newsletter from registry participants has been over- screen for focal deficits while minimizing the expertisewhelmingly positive. required of the person administering the battery. At both It is also important to ensure that investigator–users, sites, the coordinator carries out the screening. In gen-and their research staff, conform to a standard set of eral, these screening batteries have the dual aims ofpractices so that the experience of registry participants is identifying cognitive deficits that may be of researchuniform across all studies. One bad experience can lead to interest, and documenting the presence or absence ofa participant withdrawing from the registry entirely, other, potentially confounding deficits.having an obviously negative impact on the resource asa whole. Both sites have documents outlining policy in DATA MANAGEMENTthis regard. These includes standard approaches to com-pensating participants for their time and effort. They also The information collected in the screening assessment isstipulate commonsense recommendations regarding entered into secure, computerized databases. Theseprofessional behavior, dress, and what to do if a medical databases have two levels of accessibility: the coordina-emergency occurs. The UPenn database makes this ma- tor has full access, including identifying and contactterial available on their Website, and has an annual, information, whereas investigators are limited to viewingmandatory training session for research assistants, stu- deidentified information only. The main practical issuesdents, and others wishing to recruit through their regis- surrounding the database are to ensure appropriatetry. Such a session is particularly useful for students and security and to use consistent terminology particularlyresearch assistants, whose only relevant experience may for fields which are very likely to be searched by inves-be participating in or conducting behavioral experiments tigators (e.g., site of damage, symptoms, signs).in healthy undergraduate students. Neuroimaging data are also stored in digital form These measures seem to be effective: Although regis- wherever possible, although at the moment neithertry attrition due to illness, death, or patients moving registry has integrated these data, in full, directly inaway is inevitable, withdrawal at the patient’s request is the database. Improved handling of lesion data is a goaluncommon (1–2 patients/year at both sites). of both sites. Ideally, lesion data could be directly searched and visualized as images, rather than filtered through cumbersome labeling. Efforts to develop theseSCREENING tools are ongoing.Once participants are recruited and consent, some formof screening assessment is carried out. The optimal FUNDINGextent of this screening is a matter of debate, and variesacross the two sites. On the one hand, more detailed These registries are conceived of as shared, cooperativescreening provides better service to end-users of the research tools. As such, they present particular funding Fellows et al. 1111
  • challenges. Unlike some shared research resources, OUTCOMESwhere costs can be recovered through a per-use charge, The purpose of a database registry is to facilitate re-registries require sustained support regardless of inten- search. Effective facilitation should be reflected in its usesity of use. This is particularly true when the registry is by investigators, presentations, publications, and grantfirst being established; even with energetic recruitment support. At UPenn, eight faculty make use of the regis-efforts, it may be 2 or 3 years before the registry is of try; at McGill, six faculty are actively using this newsufficient size to viably support multiple users. Although resource, and a further eight have committed to sup-the costs associated with such a project are relatively porting the project with the intent of future use. Inves-low, they are continuous. Beyond basic computer re- tigators using the UPenn registry have generated 35sources, there are few equipment costs; the bulk of presentations at meetings and 22 peer-reviewed publi-the financial requirement is for salary. Such ‘‘human- cations over the 8 years of its existence, and that workpowered,’’ long-term research resources are often ill- has been supported by more than 20 externally fundedserved by traditional grant structures. grants. Although these measures are not ‘‘outcomes’’ in In principle, individual users should be able to even- any controlled sense, they support the view that suchtually cover the costs of patient registries through grant databases can be a rich resource in facilitating research.support: If anything, the registry is a more efficientmechanism for recruitment than traditional, ad hocmethods that would be funded through investigator- DISCUSSIONinitiated grants. An established registry also strengthensgrant applications by ensuring the feasibility of recruit- It is unfortunate that the colorful phrase ‘‘experimenting brain-damaged subjects. Institutional support to start of nature’’ is often applied to human lesion studies, withthe database is extremely helpful as the entire program the attendant implication of an effortless, if haphazard,requires steady funding over time to be useful, regard- enterprise. Although the lesions themselves ‘‘just hap-less of short-term intensity of use or short-term grant pen,’’ the experiments do not. As with any experimentalsuccess. Per-use charges can recoup some of the costs, method, this kind of enquiry rests on a set of proceduresparticularly those associated with screening, and per- and techniques. We argue that the evidence that can behaps neuroimaging. At UPenn, the first investigator to gleaned from lesion studies is important in understand-see a new patient bears the cost of the screening visit. ing human brain–behavior relationships, and that im-In addition, those making use of the resource contribute proving the procedures and techniques in support ofto other costs as possible, depending on their expected this method will enhance the quality and applicability ofuse, and their level of grant support. Every new grant this work to cognitive neuroscience as a whole. Thethat proposes to use the database is required to budget experience reviewed here indicates that research regis-for personnel salary costs. At McGill, the consortium of tries are a useful mechanism for supporting this kind ofresearchers supporting this resource makes a more-or- research, and for making it accessible to a wider com-less fixed annual contribution to its upkeep, including munity of investigators. We have tried to identify thecosts associated with the initial screening visit. The important elements of success, and to point out pitfallsMontreal Neurological Institute also provides support. and potential difficulties. The framework we describe is certainly not the only means of achieving this goal, but we hope that it will provide a starting point for others interested in establishing this kind of registry, andHEALTHY CONTROL PARTICIPANTS encourage those who have taken different approachesAlthough recruitment of brain-injured participants ought to solving these problems to share their expertise.to be the major challenge in carrying out lesion studies, The registries described here are cooperative re-it sometimes seems that recruiting healthy, age-matched sources at the level of single institutions; extending thiscontrol participants is even harder. The procedures and cooperation across multiple sites would have advan-tools that support the patient registries are readily adapt- tages. In theory, this could further shorten recruitmentable to healthy controls, and both McGill and UPenn times, permit group studies of patients with lesions inhave companion registries for this purpose. This results rarely injured locations, and increase sample sizes acrossin efficiencies for both participants and investigators. the board (with the latter particularly important forParticipants have already been recruited and screened, supporting newer voxel-based analysis methods). Onand do not need to scan the classifieds for research the other hand, it also would add further complexityopportunities, or submit to repeated assessments with to issues of consent, accessibility, and funding, andstandard instruments. For investigators, a quick search might reduce the likelihood of independent labs repli-in the database can identify potential participants ac- cating crucial results. Nonetheless, multi-site collabora-cording to demographic or neuropsychological varia- tion is increasingly commonplace in clinical studies ofbles, allowing rapid recruitment of a matched control rare conditions, for example, in pediatric oncologysample. (Reaman, 2004). The organizational procedures found1112 Journal of Cognitive Neuroscience Volume 20, Number 6
  • to be effective in such collaborative clinical research Reprint requests should be sent to Lesley K. Fellows, Montrealsettings could be adapted to support multisite cognitive Neurological Institute, Rm. 276, 3801 University Street, Montreal, QC, Canada H3A 2B4, or via e-mail: lesley.fellows@mcgill.ca.neuroscience research. Although full multi-site collaboration may take time toestablish, other levels of collaboration might be worth REFERENCESconsidering in the shorter term. At a minimum, these Ashburner, J., & Friston, K. J. (2000). Voxel-basedcould include sharing tools, data management methods, morphometry—The methods. Neuroimage, 11, 805–821.and recruitment approaches. The collaborative use of Bates, E., Appelbaum, M., Salcedo, J., Saygin, A. P., &particular screening instruments across sites could sup- Pizzamiglio, L. (2003). Quantifying dissociations inport interesting secondary-use studies in larger samples neuropsychological research. 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O., & Bonilha, L. (2007). Improving lesion–symptom mapping. Journal of CognitiveUPenn’s Center for Cognitive Neuroscience patient database Neuroscience, 19, 1081–1088.has been supported by the University of Pennsylvania and by Schwartz, M. F., Brecher, A. R., Whyte, J., & Klein, M. G. (2005).individual grants to Anjan Chatterjee, Branch Coslett, Martha A patient registry for cognitive rehabilitation research: AFarah, Lesley Fellows, Daniel Kimberg, Myrna Schwartz, and strategy for balancing patients’ privacy rights withSharon Thompson-Schill. The McGill Cognitive Neuroscience researchers’ need for access. Archives of PhysicalResearch Registry is supported by the Montreal Neurological Medicine and Rehabilitation, 86, 1807–1814.Institute, and by many individual investigators at McGill. Both Shallice, T. (1988). From neuropsychology to mentalsites are grateful to the many hundreds of patients and their structure. 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