PDF herunterladen
Semin Neurol 2024; 44(02): 168-177
DOI: 10.1055/s-0044-1782516
Review Article

Underrepresented and Underserved Populations in Neurological Research

Charles C. Windon
1   Department of Neurology, Memory and Aging Center, University of California, San Francisco, California
,
Ashley J. Jackson
1   Department of Neurology, Memory and Aging Center, University of California, San Francisco, California
,
Gloria A. Aguirre
1   Department of Neurology, Memory and Aging Center, University of California, San Francisco, California
,
Miwa Tucker
1   Department of Neurology, Memory and Aging Center, University of California, San Francisco, California
,
Alinda Amuiri
1   Department of Neurology, Memory and Aging Center, University of California, San Francisco, California
,
Tanisha Hill-Jarrett
1   Department of Neurology, Memory and Aging Center, University of California, San Francisco, California
,
Miranda Chen
1   Department of Neurology, Memory and Aging Center, University of California, San Francisco, California
,
Stefanie D. Pina Escuedro
1   Department of Neurology, Memory and Aging Center, University of California, San Francisco, California
,
Kevin Lieu
1   Department of Neurology, Memory and Aging Center, University of California, San Francisco, California
,
Lucia Lopez
1   Department of Neurology, Memory and Aging Center, University of California, San Francisco, California
,
Diana Mei
1   Department of Neurology, Memory and Aging Center, University of California, San Francisco, California
,
Boon Lead Tee
1   Department of Neurology, Memory and Aging Center, University of California, San Francisco, California
2   Memory and Aging Center, Department of Neurology, Global Brain Health Institute, University of California, San Francisco, California
,
Caitlin W. Watson
1   Department of Neurology, Memory and Aging Center, University of California, San Francisco, California
,
Chidera Agwu
3   Department of Neurology, Washington University School of Medicine, St. Louis, Missouri
,
Joel Kramer
1   Department of Neurology, Memory and Aging Center, University of California, San Francisco, California
,
Serggio Lanata
1   Department of Neurology, Memory and Aging Center, University of California, San Francisco, California
› Institutsangaben
Funding C.C.W. has received funding previously from the Alzheimer's Association and the National Institutes of Health (NIA R35 AG072362, AACSFD-21-872476). T.H-J. has received funding from a T32 Research Fellowship for Equity in Alzheimer's Disease and Brain Health (T32AG078115-01). B.L.T. has received funding from the Alzheimer's Association (AACSFD-22-972143), National Institutes of Health (NIA R21AG068757, R01 AG080469, R01 AG083840), and the Alzheimer's Disease Research Center of California (P30 AG062422). C.W.W. has received funding from a T32 Brain Health Equity Postdoctoral Fellowship (T32AG078115-01).
› Weitere Informationen
   Lizenzen und Reprints

Abstract

Underserved and underrepresented populations have historically been excluded from neurological research. This lack of representation has implications for translation of research findings into clinical practice given the impact of social determinants of health on neurological disease risk, progression, and outcomes. Lack of inclusion in research is driven by individual-, investigator-, and study-level barriers as well as larger systemic injustices (e.g., structural racism, discriminatory practices). Although strategies to increase inclusion of underserved and underrepresented populations have been put forth, numerous questions remain about the most effective methodology. In this article, we highlight inclusivity patterns and gaps among the most common neurological conditions and propose best practices informed by our own experiences in engagement of local community organizations and collaboration efforts to increase underserved and underrepresented population participation in neurological research.

Keywords

recruitment - community - underrepresented - underserved - research


Publikationsverlauf

Artikel online veröffentlicht:
14. März 2024

© 2024. Thieme. All rights reserved.

Thieme Medical Publishers, Inc.
333 Seventh Avenue, 18th Floor, New York, NY 10001, USA

 

  • References

  • 1 Sheiham A. Closing the gap in a generation: health equity through action on the social determinants of health. A report of the WHO Commission on Social Determinants of Health (CSDH) 2008. Community Dent Health 2009; 26 (01) 2-3
    PubMedSuche in Google Scholar
  • 2 Rosendale N. Social determinants of health in neurology. Neurol Clin 2022; 40 (01) 231-247
    CrossrefPubMedSuche in Google Scholar
  • 3 Kleindorfer DO, Khoury J, Moomaw CJ. et al. Stroke incidence is decreasing in whites but not in blacks: a population-based estimate of temporal trends in stroke incidence from the Greater Cincinnati/Northern Kentucky Stroke Study. Stroke 2010; 41 (07) 1326-1331
    CrossrefPubMedSuche in Google Scholar
  • 4 Gardener H, Sacco RL, Rundek T, Battistella V, Cheung YK, Elkind MSV. Race and ethnic disparities in stroke incidence in the Northern Manhattan Study. Stroke 2020; 51 (04) 1064-1069
    CrossrefPubMedSuche in Google Scholar
  • 5 Jaiswal V, Hanif M, Ang SP. et al. The racial disparity among the clinical outcomes post stroke and its intervention outcomes: a systematic review and meta-analysis. Curr Probl Cardiol 2023; 48 (09) 101753
    CrossrefPubMedSuche in Google Scholar
  • 6 Burneo JG, Jette N, Theodore W. et al; Task Force on Disparities in Epilepsy Care, North American Commission of the International League Against Epilepsy. Disparities in epilepsy: report of a systematic review by the North American Commission of the International League Against Epilepsy. Epilepsia 2009; 50 (10) 2285-2295
    CrossrefPubMedSuche in Google Scholar
  • 7 Burch R, Rizzoli P, Loder E. The prevalence and impact of migraine and severe headache in the United States: updated age, sex, and socioeconomic-specific estimates from government health surveys. Headache 2021; 61 (01) 60-68
    CrossrefPubMedSuche in Google Scholar
  • 8 Mayeda ER, Glymour MM, Quesenberry CP, Whitmer RA. Inequalities in dementia incidence between six racial and ethnic groups over 14 years. Alzheimers Dement 2016; 12 (03) 216-224
    CrossrefPubMedSuche in Google Scholar
  • 9 Gurland BJ, Wilder DE, Lantigua R. et al. Rates of dementia in three ethnoracial groups. Int J Geriatr Psychiatry 1999; 14 (06) 481-493
    CrossrefPubMedSuche in Google Scholar
  • 10 Colby SL, Ortman JM. Projections of the Size and Composition of the U.S. Population: 2014 to 2060 (Current Population Reports, P25-1143). Washington, DC:: US Census Bureau;; 2017
    Suche in Google Scholar
  • 11 González HM, Tarraf W, Schneiderman N. et al. Prevalence and correlates of mild cognitive impairment among diverse Hispanics/Latinos: Study of Latinos-Investigation of Neurocognitive Aging results. Alzheimers Dement 2019; 15 (12) 1507-1515
    CrossrefPubMedSuche in Google Scholar
  • 12 Feigin VL, Vos T, Alahdab F. et al; GBD 2017 US Neurological Disorders Collaborators. Burden of neurological disorders across the US From 1990-2017: a global burden of disease study. JAMA Neurol 2021; 78 (02) 165-176
    CrossrefPubMedSuche in Google Scholar
  • 13 Burke JF, Brown DL, Lisabeth LD, Sanchez BN, Morgenstern LB. Enrollment of women and minorities in NINDS trials. Neurology 2011; 76 (04) 354-360
    CrossrefPubMedSuche in Google Scholar
  • 14 Acton EK, Abbasi MH, Kasner SE. Evaluating age, sex, racial, and ethnic representation in acute ischemic stroke trials, 2010 to 2020: a systematic review and meta-analysis. J Am Heart Assoc 2022; 11 (08) e024651
    CrossrefPubMedSuche in Google Scholar
  • 15 Bako AT, Pan AP, Potter T. et al. Demographic characteristics and clinical outcomes of asian american and pacific islander patients with primary intracerebral hemorrhage. JAMA Netw Open 2021; 4 (12) e2138786
    CrossrefPubMedSuche in Google Scholar
  • 16 Brott TG, Haley Jr EC, Levy DE. et al. Urgent therapy for stroke. Part I. Pilot study of tissue plasminogen activator administered within 90 minutes. Stroke 1992; 23 (05) 632-640
    CrossrefPubMedSuche in Google Scholar
  • 17 Haley Jr EC, Levy DE, Brott TG. et al. Urgent therapy for stroke. Part II. Pilot study of tissue plasminogen activator administered 91-180 minutes from onset. Stroke 1992; 23 (05) 641-645
    CrossrefPubMedSuche in Google Scholar
  • 18 National Institute of Neurological Disorders and Stroke rt-PA Stroke Study Group. Tissue plasminogen activator for acute ischemic stroke. N Engl J Med 1995; 333 (24) 1581-1587
    CrossrefPubMedSuche in Google Scholar
  • 19 Hsia AW, Edwards DF, Morgenstern LB. et al. Racial disparities in tissue plasminogen activator treatment rate for stroke: a population-based study. Stroke 2011; 42 (08) 2217-2221
    CrossrefPubMedSuche in Google Scholar
  • 20 Berkhemer OA, Fransen PS, Beumer D. et al; MR CLEAN Investigators. A randomized trial of intraarterial treatment for acute ischemic stroke. [published correction appears in N Engl J Med. 2015 Jan 22;372(4):394] N Engl J Med 2015; 372 (01) 11-20
    Suche in Google Scholar
  • 21 Saver JL, Goyal M, Bonafe A. et al; SWIFT PRIME Investigators. Stent-retriever thrombectomy after intravenous t-PA vs. t-PA alone in stroke. N Engl J Med 2015; 372 (24) 2285-2295
    Suche in Google Scholar
  • 22 Goyal M, Demchuk AM, Menon BK. et al; ESCAPE Trial Investigators. Randomized assessment of rapid endovascular treatment of ischemic stroke. N Engl J Med 2015; 372 (11) 1019-1030
    Suche in Google Scholar
  • 23 Jovin TG, Chamorro A, Cobo E. et al; REVASCAT Trial Investigators. Thrombectomy within 8 hours after symptom onset in ischemic stroke. N Engl J Med 2015; 372 (24) 2296-230
    Suche in Google Scholar
  • 24 Campbell BC, Mitchell PJ, Kleinig TJ. et al; EXTEND-IA Investigators. Endovascular therapy for ischemic stroke with perfusion-imaging selection. N Engl J Med 2015; 372 (11) 1009-1018
    CrossrefPubMedSuche in Google Scholar
  • 25 Nogueira RG, Jadhav AP, Haussen DC. et al; DAWN Trial Investigators. Thrombectomy 6 to 24 hours after stroke with a mismatch between deficit and infarct. N Engl J Med 2018; 378 (01) 11-21
    CrossrefPubMedSuche in Google Scholar
  • 26 Albers GW, Marks MP, Kemp S. et al; DEFUSE 3 Investigators. Thrombectomy for stroke at 6 to 16 hours with selection by perfusion imaging. N Engl J Med 2018; 378 (08) 708-718
    CrossrefPubMedSuche in Google Scholar
  • 27 Kong WY, Saber H, Marawar R, Basha MM. Racial and ethnic trends in antiseizure medications trial enrolment: a systematic review using ClinicalTrials.gov. Epilepsy Res 2021; 173: 106613
    CrossrefPubMedSuche in Google Scholar
  • 28 Ngugi AK, Bottomley C, Kleinschmidt I, Sander JW, Newton CR. Estimation of the burden of active and life-time epilepsy: a meta-analytic approach. Epilepsia 2010; 51 (05) 883-890
    CrossrefPubMedSuche in Google Scholar
  • 29 Ben-Menachem E, Falter U. European Levetiracetam Study Group. Efficacy and tolerability of levetiracetam 3000 mg/d in patients with refractory partial seizures: a multicenter, double-blind, responder-selected study evaluating monotherapy. Epilepsia 2000; 41 (10) 1276-1283
    CrossrefPubMedSuche in Google Scholar
  • 30 Shorvon SD, Löwenthal A, Janz D, Bielen E, Loiseau P. European Levetiracetam Study Group. Multicenter double-blind, randomized, placebo-controlled trial of levetiracetam as add-on therapy in patients with refractory partial seizures. Epilepsia 2000; 41 (09) 1179-1186
    CrossrefPubMedSuche in Google Scholar
  • 31 Cereghino JJ, Biton V, Abou-Khalil B, Dreifuss F, Gauer LJ, Leppik I. Levetiracetam for partial seizures: results of a double-blind, randomized clinical trial. Neurology 2000; 55 (02) 236-242
    CrossrefPubMedSuche in Google Scholar
  • 32 Porter RJ, Partiot A, Sachdeo R, Nohria V, Alves WM. 205 Study Group. Randomized, multicenter, dose-ranging trial of retigabine for partial-onset seizures. Neurology 2007; 68 (15) 1197-1204
    CrossrefPubMedSuche in Google Scholar
  • 33 Wechsler RT, Li G, French J. et al; ALEX-MT Study Group. Conversion to lacosamide monotherapy in the treatment of focal epilepsy: results from a historical-controlled, multicenter, double-blind study. Epilepsia 2014; 55 (07) 1088-1098
    CrossrefPubMedSuche in Google Scholar
  • 34 Ben-Menachem E, Mameniškienė R, Quarato PP. et al. Efficacy and safety of brivaracetam for partial-onset seizures in 3 pooled clinical studies. Neurology 2016; 87 (03) 314-323
    CrossrefPubMedSuche in Google Scholar
  • 35 Wiebe S, Blume WT, Girvin JP, Eliasziw M. Effectiveness and Efficiency of Surgery for Temporal Lobe Epilepsy Study Group. A randomized, controlled trial of surgery for temporal-lobe epilepsy. N Engl J Med 2001; 345 (05) 311-318
    CrossrefPubMedSuche in Google Scholar
  • 36 Engel Jr J, McDermott MP, Wiebe S. et al; Early Randomized Surgical Epilepsy Trial (ERSET) Study Group. Early surgical therapy for drug-resistant temporal lobe epilepsy: a randomized trial. JAMA 2012; 307 (09) 922-930
    CrossrefPubMedSuche in Google Scholar
  • 37 Burch R, Rizzoli P, Loder E. The prevalence and impact of migraine and severe headache in the United States: figures and trends from government health studies. Headache 2018; 58 (04) 496-505
    CrossrefPubMedSuche in Google Scholar
  • 38 Binder WJ, Brin MF, Blitzer A, Schoenrock LD, Pogoda JM. Botulinum toxin type A (BOTOX) for treatment of migraine headaches: an open-label study. Otolaryngol Head Neck Surg 2000; 123 (06) 669-676
    CrossrefPubMedSuche in Google Scholar
  • 39 Silberstein S, Mathew N, Saper J, Jenkins S. For the BOTOX Migraine Clinical Research Group. Botulinum toxin type A as a migraine preventive treatment. Headache 2000; 40 (06) 445-450
    CrossrefPubMedSuche in Google Scholar
  • 40 Ho TW, Connor KM, Zhang Y. et al. Randomized controlled trial of the CGRP receptor antagonist telcagepant for migraine prevention. Neurology 2014; 83 (11) 958-966
    CrossrefPubMedSuche in Google Scholar
  • 41 Hewitt DJ, Aurora SK, Dodick DW. et al. Randomized controlled trial of the CGRP receptor antagonist MK-3207 in the acute treatment of migraine. Cephalalgia 2011; 31 (06) 712-722
    CrossrefPubMedSuche in Google Scholar
  • 42 Marcus R, Goadsby PJ, Dodick D, Stock D, Manos G, Fischer TZ. BMS-927711 for the acute treatment of migraine: a double-blind, randomized, placebo controlled, dose-ranging trial. Cephalalgia 2014; 34 (02) 114-125
    CrossrefPubMedSuche in Google Scholar
  • 43 Diener HC, Barbanti P, Dahlöf C, Reuter U, Habeck J, Podhorna J. BI 44370 TA, an oral CGRP antagonist for the treatment of acute migraine attacks: results from a phase II study. Cephalalgia 2011; 31 (05) 573-584
    CrossrefPubMedSuche in Google Scholar
  • 44 Lim AC, Barnes LL, Weissberger GH. et al. Quantification of race/ethnicity representation in Alzheimer's disease neuroimaging research in the USA: a systematic review. Commun Med (Lond) 2023; 3 (01) 101
    CrossrefPubMedSuche in Google Scholar
  • 45 van Dyck CH, Swanson CJ, Aisen P. et al. Lecanemab in early Alzheimer's disease. N Engl J Med 2023; 388 (01) 9-21
    CrossrefPubMedSuche in Google Scholar
  • 46 Budd Haeberlein S, Aisen PS, Barkhof F. et al. Two randomized phase 3 studies of aducanumab in early Alzheimer's disease. J Prev Alzheimers Dis 2022; 9 (02) 197-210
    CrossrefPubMedSuche in Google Scholar
  • 47 Manly JJ, Gilmore-Bykovskyi A, Deters KD. Inclusion of underrepresented groups in preclinical Alzheimer disease trials-opportunities abound. JAMA Netw Open 2021; 4 (07) e2114606
    CrossrefPubMedSuche in Google Scholar
  • 48 Manly JJ, Deters KD. Donanemab for Alzheimer disease-who benefits and who is harmed?. JAMA 2023; 330 (06) 510-511
    CrossrefPubMedSuche in Google Scholar
  • 49 Turner BE, Steinberg JR, Weeks BT, Rodriguez F, Cullen MR. Race/ethnicity reporting and representation in US clinical trials: a cohort study. Lancet Reg Health Am 2022; 11: 100252
    PubMedSuche in Google Scholar
  • 50 Alegria M, Sud S, Steinberg BE, Gai N, Siddiqui A. Reporting of participant race, sex, and socioeconomic status in randomized clinical trials in general medical journals, 2015 vs 2019. JAMA Netw Open 2021; 4 (05) e2111516
    CrossrefPubMedSuche in Google Scholar
  • 51 Orkin AM, Nicoll G, Persaud N, Pinto AD. Reporting of sociodemographic variables in randomized clinical trials, 2014-2020. JAMA Netw Open 2021;4(06):e2110700
    PubMed
  • 52 Branson RD, Davis Jr K, Butler KL. African Americans' participation in clinical research: importance, barriers, and solutions. Am J Surg 2007; 193 (01) 32-39 , discussion 40
    CrossrefPubMedSuche in Google Scholar
  • 53 George S, Duran N, Norris K. A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders. Am J Public Health 2014; 104 (02) e16-e31
    CrossrefPubMedSuche in Google Scholar
  • 54 Pimentel Maldonado DA, Moreno A, Williams MJ. et al. Perceptions and preferences regarding multiple sclerosis research among racial and ethnic groups. Int J MS Care 2021; 23 (04) 170-177
    CrossrefPubMedSuche in Google Scholar
  • 55 Alzheimer's Association. 2021 Alzheimer's disease facts and figures. Alzheimers Dement 2021; 17 (03) 327-406
    CrossrefPubMedSuche in Google Scholar
  • 56 Haley SJ, Southwick LE, Parikh NS, Rivera J, Farrar-Edwards D, Boden-Albala B. Barriers and strategies for recruitment of racial and ethnic minorities: perspectives from neurological clinical research coordinators. J Racial Ethn Health Disparities 2017; 4 (06) 1225-1236
    CrossrefPubMedSuche in Google Scholar
  • 57 Goodwin JS, Black SA, Satish S. Aging versus disease: the opinions of older black, Hispanic, and non-Hispanic White Americans about the causes and treatment of common medical conditions. J Am Geriatr Soc 1999; 47 (08) 973-979
    CrossrefPubMedSuche in Google Scholar
  • 58 Morshed RA, Reihl SJ, Molinaro AM. et al. The influence of race and socioeconomic status on therapeutic clinical trial screening and enrollment. J Neurooncol 2020; 148 (01) 131-139
    CrossrefPubMedSuche in Google Scholar
  • 59 Franzen S, Smith JE, van den Berg E. et al. Diversity in Alzheimer's disease drug trials: the importance of eligibility criteria. Alzheimers Dement 2022; 18 (04) 810-823
    CrossrefPubMedSuche in Google Scholar
  • 60 Indorewalla KK, O'Connor MK, Budson AE, Guess DiTerlizzi C, Jackson J. Modifiable barriers for recruitment and retention of older adults participants from underrepresented minorities in Alzheimer's disease research. J Alzheimers Dis 2021; 80 (03) 927-940
    CrossrefPubMedSuche in Google Scholar
  • 61 Gilmore-Bykovskyi AL, Jin Y, Gleason C. et al. Recruitment and retention of underrepresented populations in Alzheimer's disease research: a systematic review. [published correction appears in Alzheimers Dement (N Y). 2022 Feb 03;6(1):e12051] Alzheimers Dement (N Y) 2019; 5: 751-770
    CrossrefPubMedSuche in Google Scholar
  • 62 Boden-Albala B, Carman H, Southwick L. et al. Examining barriers and practices to recruitment and retention in stroke clinical trials. Stroke 2015; 46 (08) 2232-2237
    CrossrefPubMedSuche in Google Scholar
  • 63 Newberry A, Sherwood P, Hricik A. et al. Understanding recruitment and retention in neurological research. J Neurosci Nurs 2010; 42 (01) 47-57
    CrossrefPubMedSuche in Google Scholar
  • 64 Schneider MG, Swearingen CJ, Shulman LM, Ye J, Baumgarten M, Tilley BC. Minority enrollment in Parkinson's disease clinical trials. Parkinsonism Relat Disord 2009; 15 (04) 258-262
    CrossrefPubMedSuche in Google Scholar
  • 65 Savold J, Cole M, Thorpe Jr RJ. Barriers and solutions to Alzheimer's disease clinical trial participation for Black Americans. Alzheimers Dement (N Y) 2023; 9 (03) e12402
    CrossrefPubMedSuche in Google Scholar
  • 66 Wong R, Amano T, Lin SY, Zhou Y, Morrow-Howell N. Strategies for the recruitment and retention of racial/ethnic minorities in alzheimer disease and dementia clinical research. Curr Alzheimer Res 2019; 16 (05) 458-471
    CrossrefPubMedSuche in Google Scholar
  • 67 Adrissi J, Fleisher J. Moving the dial toward equity in parkinson's disease clinical research: a review of current literature and future directions in diversifying PD clinical trial participation. Curr Neurol Neurosci Rep 2022; 22 (08) 475-483
    CrossrefPubMedSuche in Google Scholar
  • 68 Lemacks J, Landry A, Wenzler P. Formative research to identify community partnerships and foster relationships for health promotion research in South Mississippi. Public Health 2018; 159: 58-62
    CrossrefPubMedSuche in Google Scholar
  • 69 Jones M, Hoague D, Spriggs R. et al. Establishing a framework for sustainable community action research. Ethn Dis 2022; 32 (04) 333-340
    CrossrefPubMedSuche in Google Scholar
  • 70 Hoeft TJ, Burke W, Hopkins SE. et al. Building partnerships in community-based participatory research: budgetary and other cost considerations. Health Promot Pract 2014; 15 (02) 263-270
    CrossrefPubMedSuche in Google Scholar
  • 71 Mendez-Luck CA, Trejo L, Miranda J, Jimenez E, Quiter ES, Mangione CM. Recruitment strategies and costs associated with community-based research in a Mexican-origin population. Gerontologist 2011; 51 (suppl 1) S94-S105
    CrossrefPubMedSuche in Google Scholar
  • 72 Wallerstein N, Muhammad M, Sanchez-Youngman S. et al. Power dynamics in community-based participatory research: a multiple-case study analysis of partnering contexts, histories, and practices. Health Educ Behav 2019; 46 (1_suppl) 19S-32S
    CrossrefPubMedSuche in Google Scholar
  • 73 Turin TC, Chowdhury N, Rumana N, Lasker MAA, Qasqas M. Partnering with organisations beyond academia through strategic collaboration for research and mobilisation in immigrant/ethnic-minority communities. BMJ Glob Health 2022; 7 (03) e008201
    CrossrefPubMedSuche in Google Scholar
  • 74 Butler-Ajibade P, Booth W, Burwell C. Partnering with the black church: recipe for promoting heart health in the stroke belt. ABNF J 2012; 23 (02) 34-37
    PubMedSuche in Google Scholar
  • 75 Gluck MA, Shaw A, Hill D. Recruiting older African Americans to brain health and aging research through community engagement: lessons from the African-American Brain Health Initiative at Rutgers University-Newark. Generations 2018; 42 (02) 78-82
    PubMedSuche in Google Scholar
  • 76 Cocroft S, Welsh-Bohmer KA, Plassman BL. et al. Racially diverse participant registries to facilitate the recruitment of African Americans into presymptomatic Alzheimer's disease studies. Alzheimers Dement 2020; 16 (08) 1107-1114
    CrossrefPubMedSuche in Google Scholar