Transparency, trust and minimizing burden to increase recruitment and recruitment in trials: a systematic review.

[1]  R. Bellomo,et al.  Does asymmetry in patient recruitment in large critical care trials follow the Pareto principle? , 2020, Trials.

[2]  C. Presant,et al.  Strategies to Improve Participation of Older Adults in Cancer Research , 2020, Journal of clinical medicine.

[3]  David W. Johnson,et al.  Recruitment and retention in clinical trials in chronic kidney disease: report from national workshops with patients, caregivers and health professionals. , 2020, Nephrology, dialysis, transplantation : official publication of the European Dialysis and Transplant Association - European Renal Association.

[4]  S. Treweek,et al.  Using evidence when planning for trial recruitment: An international perspective from time-poor trialists , 2019, PloS one.

[5]  J. Taylor.  Reporting research findings to participants is an ethical imperative , 2019, BMJ.

[6]  S. Schroter,et al.  Frequency and format of clinical trial results dissemination to patients: a survey of authors of trials indexed in PubMed , 2019, BMJ Open.

[7]  C. Berthelsen,et al.  Cancer patients' perceptions of factors influencing their decisions on participation in clinical drug trials: A qualitative meta-synthesis. , 2019, Journal of clinical nursing.

[8]  K. Gillies,et al.  Exploring non-retention in clinical trials: a meta-ethnographic synthesis of studies reporting participant reasons for drop out , 2019, BMJ Open.

[9]  C. Arnold,et al.  A Qualitative Study Exploring Barriers and Facilitators of Enrolling Underrepresented Populations in Clinical Trials and Biobanking , 2019, Front. Cell Dev. Biol..

[10]  A. Keech,et al.  Recruitment strategies in randomised controlled trials of men aged 50 years and older: a systematic review , 2019, BMJ Open.

[11]  C. Long,et al.  Health researchers’ experiences, perceptions and barriers related to sharing study results with participants , 2019, Health Research Policy and Systems.

[12]  K. Muto,et al.  “Tell me what you suggest, and let’s do that, doctor”: Patient deliberation time during informal decision-making in clinical trials , 2019, PloS one.

[13]  G. Lewith,et al.  Informing Adults With Back Pain About Placebo Effects: Randomized Controlled Evaluation of a New Website With Potential to Improve Informed Consent in Clinical Research , 2019, Journal of medical Internet research.

[14]  A. Sowan,et al.  Developing, Implementing, and Evaluating a Multimedia Patient Decision Aid Program to Reform the Informed Consent Process of a Peripherally Inserted Central Venous Catheter Procedure: Protocol for Quality Improvement , 2018, JMIR research protocols.

[15]  Sian Rees,et al.  Impact of patient and public involvement on enrolment and retention in clinical trials: systematic review and meta-analysis , 2018, British Medical Journal.

[16]  Sarah Mertens,et al.  The development of an end-to-end service solution to support lupus patients and improve their experience in clinical trials , 2018, Clinical trials.

[17]  L. Saiman,et al.  Understanding of safety monitoring in clinical trials by individuals with CF or their parents: A qualitative analysis. , 2018, Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society.

[18]  S. Lewin,et al.  Perceptions of HIV cure research among people living with HIV in Australia , 2018, PloS one.

[19]  Janice L. Krieger,et al.  Patient Perceptions of Illness Identity in Cancer Clinical Trial Decision-Making , 2018, Health communication.

[20]  L. Bugeja,et al.  Barriers and enablers to patient recruitment for randomised controlled trials on treatment of chronic wounds: A systematic review , 2018, International wound journal.

[21]  J. A. Bell,et al.  Perceptions of and decision making about clinical trials in adolescent and young adults with Cancer: a qualitative analysis , 2018, BMC Cancer.

[22]  Jennifer A. Bell,et al.  Perceptions and attitudes toward clinical trials in adolescent and young adults with cancer: a systematic review , 2018, Adolescent health, medicine and therapeutics.

[23]  A. Jatoi,et al.  “Ultimately, mom has the call”: Viewing clinical trial decision making among patients with ovarian cancer through the lens of relational autonomy , 2018, Health expectations : an international journal of public participation in health care and health policy.

[24]  Grant D. Huang,et al.  Clinical trials recruitment planning: A proposed framework from the Clinical Trials Transformation Initiative. , 2018, Contemporary clinical trials.

[25]  S. Treweek,et al.  Strategies to improve recruitment to randomised trials. , 2018, The Cochrane database of systematic reviews.

[26]  L. Duley,et al.  Women’s views and experiences of two alternative consent pathways for participation in a preterm intrapartum trial: a qualitative study , 2017, Trials.

[27]  E. Freeman,et al.  Perceptions of Cancer Care and Clinical Trials in the Black Community: Implications for Care Coordination Between Oncology and Primary Care Teams. , 2017, The oncologist.

[28]  M. Landray,et al.  Challenges in conducting clinical trials in nephrology: conclusions from a Kidney Disease—Improving Global Outcomes (KDIGO) Controversies Conference , 2017, Kidney international.

[29]  P. Meskell,et al.  Factors that impact on recruitment to randomised trials in health care: a qualitative evidence synthesis. , 2017, The Cochrane database of systematic reviews.

[30]  Daniel Hind,et al.  Recruitment and retention of participants in randomised controlled trials: a review of trials funded and published by the United Kingdom Health Technology Assessment Programme , 2017, BMJ Open.

[31]  A. Jatoi,et al.  Patient and family member perspectives on searching for cancer clinical trials: A qualitative interview study. , 2017, Patient education and counseling.

[32]  Stephanie J. C. Taylor,et al.  Effect of an Education Programme for South Asians with Asthma and Their Clinicians: A Cluster Randomised Controlled Trial (OEDIPUS) , 2016, PloS one.

[33]  B. Vaidya,et al.  Exploring the motivations of patients with type 2 diabetes to participate in clinical trials: a qualitative analysis , 2016, Research Involvement and Engagement.

[34]  A. Agarwal,et al.  A systematic review of discontinued trials suggested that most reasons for recruitment failure were preventable. , 2016, Journal of clinical epidemiology.

[35]  C. Witt,et al.  Women's reasons for participation in a clinical trial for menstrual pain: a qualitative study , 2016, BMJ Open.

[36]  R. Dent,et al.  Barriers and facilitators for clinical trial participation among diverse Asian patients with breast cancer: a qualitative study , 2016, BMC Women's Health.

[37]  B. Summers,et al.  Identifying components in consent information needed to support informed decision making about trial participation: An interview study with women managing cancer. , 2016, Social science & medicine.

[38]  Joanna Mitchell,et al.  Reasons for non-participation in a primary care-based physical activity trial: a qualitative study , 2016, BMJ Open.

[39]  U. Knoch,et al.  Culturally and Linguistically Diverse Populations in Medical Research: Perceptions and Experiences of Older Italians, Their Families, Ethics Administrators and Researchers , 2016, Journal of public health research.

[40]  C. Chauhan.  Patients’ views can improve clinical trials for participants , 2016, British Medical Journal.

[41]  S. Goodacre,et al.  How do patients feel about taking part in clinical trials in emergency care? , 2016, Emergency Medicine Journal.

[42]  L. Locock,et al.  Young People's Experiences of Participation in Clinical Trials: Reasons for Taking Part , 2015, The American journal of bioethics : AJOB.

[43]  A. Sheikh,et al.  Muslim communities learning about second-hand smoke: a pilot cluster randomised controlled trial and cost-effectiveness analysis , 2015, npj Primary Care Respiratory Medicine.

[44]  Nina S. Parikh,et al.  Examining Barriers and Practices to Recruitment and Retention in Stroke Clinical Trials , 2015, Stroke.

[45]  S. Duffy,et al.  Barriers to uptake among high-risk individuals declining participation in lung cancer screening: a mixed methods analysis of the UK Lung Cancer Screening (UKLS) trial , 2015, BMJ Open.

[46]  O. Zvonareva,et al.  Risks and benefits of trial participation: A qualitative study of participants’ perspectives in Russia , 2015, Clinical trials.

[47]  J. Ford,et al.  A Model of Cancer Clinical Trial Decision-making Informed by African-American Cancer Patients , 2015, Journal of Racial and Ethnic Health Disparities.

[48]  Graham Thornicroft,et al.  Customising informed consent procedures for people with schizophrenia in India , 2015, Social Psychiatry and Psychiatric Epidemiology.

[49]  K. Cloyes,et al.  Cancer Fear and Fatalism: How African American Participants Construct the Role of Research Subject in Relation to Clinical Cancer Research , 2015, Cancer nursing.

[50]  Janice L. Krieger,et al.  Comprehension of Randomization and Uncertainty in Cancer Clinical Trials Decision Making Among Rural, Appalachian Patients , 2015, Journal of Cancer Education.

[51]  Florian Keusch,et al.  Participation in clinical research: perspectives of adult patients and parents of pediatric patients undergoing hematopoietic stem cell transplantation. , 2014, Biology of blood and marrow transplantation : journal of the American Society for Blood and Marrow Transplantation.

[52]  Nancy J Burke.  Rethinking the therapeutic misconception: social justice, patient advocacy, and cancer clinical trial recruitment in the US safety net , 2014, BMC medical ethics.

[53]  Lindsey Haynes-Maslow,et al.  African American women's perceptions of cancer clinical trials , 2014, Cancer medicine.

[54]  Zhiyuan Zheng,et al.  Patient-centeredness in the design of clinical trials. , 2014, Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research.

[55]  Anne Douglas,et al.  Effect of a lifestyle intervention on weight change in south Asian individuals in the UK at high risk of type 2 diabetes: a family-cluster randomised controlled trial. , 2014, The lancet. Diabetes & endocrinology.

[56]  V. Sheppard,et al.  Recruiting Chinese Americans into cancer screening intervention trials: Strategies and outcomes , 2014, Clinical trials.

[57]  G. Rait,et al.  Strategies to improve retention in randomised trials: a Cochrane systematic review and meta-analysis , 2014, BMJ Open.

[58]  Rustam Al-Shahi Salman,et al.  Increasing value and reducing waste in biomedical research regulation and management , 2014, The Lancet.

[59]  L. Siminoff,et al.  Perceptions of participation in a phase I, II, or III clinical trial among African American patients with cancer: what do refusers say? , 2013, Journal of oncology practice.

[60]  S. Cox,et al.  Accessing health services through the back door: a qualitative interview study investigating reasons why people participate in health research in Canada , 2013, BMC medical ethics.

[61]  S. Thorne,et al.  Of Guinea pigs and gratitude: the difficult discourse of clinical trials from the cancer patient perspective. , 2013, European journal of cancer care.

[62]  G. Quinn,et al.  Improving Awareness of Cancer Clinical Trials Among Hispanic Patients and Families: Audience Segmentation Decisions for a Media Intervention , 2013, Journal of health communication.

[63]  G. Corbie-Smith,et al.  Development of a Multilevel Intervention to Increase HIV Clinical Trial Participation Among Rural Minorities , 2013, Health education & behavior : the official publication of the Society for Public Health Education.

[64]  K. Weinfurt,et al.  Participants’ perspectives on safety monitoring in clinical trials , 2013, Clinical trials.

[65]  T. W. Leung,et al.  Patients’ Views on Failure to Gain Expected Clinical Beneficial Outcomes From Participation in Palliative Medicine Clinical Trials , 2013, The American journal of hospice & palliative care.

[66]  R. Shaw,et al.  Barriers to recruitment for surgical trials in head and neck oncology: a survey of trial investigators , 2013, BMJ Open.

[67]  S. Oliver,et al.  Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ , 2012, BMC Medical Research Methodology.

[68]  A. Beck,et al.  Recruiting older men for geriatric suicide research , 2012, International Psychogeriatrics.

[69]  S. Bass,et al.  Minority HIV patients' perceptions of barriers and facilitators to participation in clinical research. , 2012, Current HIV Research.

[70]  G. Lewis,et al.  Exploring patients' reasons for declining contact in a cognitive behavioural therapy randomised controlled trial in primary care. , 2012, The British journal of general practice : the journal of the Royal College of General Practitioners.

[71]  H. Palevsky,et al.  Motivations of patients with pulmonary arterial hypertension to participate in randomized clinical trials , 2012, Clinical trials.

[72]  C. Meade,et al.  Cancer Patients' Fears Related to Clinical Trial Participation: A Qualitative Study , 2012, Journal of Cancer Education.

[73]  G. Lip,et al.  Diabetes Health, Residence & Metabolism in Asians: the DHRMA study, research into foods from the Indian subcontinent - a blinded, randomised, placebo controlled trial , 2011, BMC cardiovascular disorders.

[74]  G. Bepler,et al.  Lung Cancer Patients’ Decisions About Clinical Trials and the Theory of Planned Behavior , 2011, Journal of Cancer Education.

[75]  J. Simard,et al.  Return of Research Results: General Principles and International Perspectives , 2011, Journal of Law, Medicine & Ethics.

[76]  L. Locock,et al.  Personal experiences of taking part in clinical trials - a qualitative study. , 2011, Patient education and counseling.

[77]  A. Sheikh,et al.  Promoting smoking cessation in Pakistani and Bangladeshi men in the UK: pilot cluster randomised controlled trial of trained community outreach workers , 2011, Trials.

[78]  P. Malmström,et al.  Towards optimised information about clinical trials; identification and validation of key issues in collaboration with cancer patient advocates. , 2011, European journal of cancer care.

[79]  J. Kusek,et al.  Recruitment of participants to a clinical trial of botanical therapy for benign prostatic hyperplasia. , 2011, Journal of alternative and complementary medicine.

[80]  M. Benzeval,et al.  A systematic review of the effect of retention methods in population-based cohort studies , 2011, BMC public health.

[81]  L. Locock,et al.  Personal benefit, or benefiting others? Deciding whether to take part in clinical trials , 2011, Clinical trials.

[82]  H. Bertz,et al.  What do our patients understand about their trial participation? Assessing patients' understanding of their informed consent consultation about randomised clinical trials , 2010, Journal of Medical Ethics.

[83]  F. Creed,et al.  Social intervention for British Pakistani women with depression: randomised controlled trial. , 2010, The British journal of psychiatry : the journal of mental science.

[84]  K. Weinfurt,et al.  The culture of faith and hope , 2010, Cancer.

[85]  P. Myles,et al.  Improving communication when seeking informed consent: a randomised controlled study of a computer‐based method for providing information to prospective clinical trial participants , 2010, The Medical journal of Australia.

[86]  Tomoko Inoue,et al.  Searching for a way to live to the end: decision-making process in patients considering participation in cancer phase I clinical trials. , 2010, Oncology nursing forum.

[87]  A. Avenell,et al.  Factors influencing the participation of older people in clinical trials — data analysis from the MAVIS trial , 2010, The journal of nutrition, health & aging.

[88]  A. Khoury,et al.  Knowledge, Attitudes, and Practices of Underserved Women in the Rural South Toward Breast Cancer Prevention and Detection , 2009, Family & community health.

[89]  S. Cha,et al.  Patients' attitudes and preferences about participation and recruitment strategies in clinical trials. , 2009, Mayo Clinic proceedings.

[90]  A. Harden,et al.  Methods for the thematic synthesis of qualitative research in systematic reviews , 2008, BMC medical research methodology.

[91]  Nir Lipsman,et al.  Patients' perception of the informed consent process for neurooncology clinical trials. , 2008, Neuro-oncology.

[92]  P. Sainsbury,et al.  Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. , 2007, International journal for quality in health care : journal of the International Society for Quality in Health Care.

[93]  M. Mcmurdo,et al.  When "no" might not quite mean "no"; the importance of informed and meaningful non-consent: results from a survey of individuals refusing participation in a health-related research project , 2007, BMC Health Services Research.

[94]  G. Bepler,et al.  The Guinea Pig Syndrome: Improving Clinical Trial Participation among Thoracic Patients , 2007, Journal of thoracic oncology : official publication of the International Association for the Study of Lung Cancer.

[95]  S. Holm,et al.  Participating in a cancer clinical trial? The balancing of options in the loneliness of autonomy: A grounded theory interview study , 2007, Acta oncologica.

[96]  R. Belue,et al.  African Americans and participation in clinical trials: differences in beliefs and attitudes by gender. , 2006, Contemporary clinical trials.

[97]  K. Mooney,et al.  Factors that influence Spanish‐ and English‐speaking participants' decision to enroll in cancer randomized clinical trials , 2006, Psycho-oncology.

[98]  P. Crome,et al.  What Patients Want: Consumer Involvement in the Design of a Randomized Controlled Trial of Routine Oxygen Supplementation After Acute Stroke , 2006, Stroke.

[99]  Kelvin K. W. Chan,et al.  Understanding the attitudes of the elderly towards enrolment into cancer clinical trials , 2006, BMC Cancer.

[100]  C. Drescher,et al.  Clinical trials: Understanding and perceptions of female Chinese‐American cancer patients , 2005, Cancer.

[101]  M. Nicolson,et al.  Patient motivations surrounding participation in phase I and phase II clinical trials of cancer chemotherapy , 2005, British Journal of Cancer.

[102]  T. Kaptchuk,et al.  Patient expectations in placebo-controlled randomized clinical trials. , 2005, Journal of evaluation in clinical practice.

[103]  M. Hussain-Gambles.  South Asian patients' views and experiences of clinical trial participation. , 2004, Family practice.

[104]  M. Hussain-Gambles,et al.  Involving South Asian patients in clinical trials. , 2004, Health technology assessment.

[105]  S. Ahmedzai,et al.  Why do breast cancer patients decline entry into randomised trials and how do they feel about their decision later: a prospective, longitudinal, in-depth interview study. , 2004, Patient education and counseling.

[106]  L. Ellington,et al.  Decision-making issues for randomized clinical trial participation among Hispanics. , 2003, Cancer control : journal of the Moffitt Cancer Center.

[107]  Karl Atkin,et al.  Representation of South Asian people in randomised clinical trials: analysis of trials' data , 2003, BMJ : British Medical Journal.

[108]  M. Ruffin,et al.  Original ArticlesWomen's feedback on a chemopreventive trial for cervical dysplasia*** , 2003 .

[109]  P. Ferguson,et al.  Patients' perceptions of information provided in clinical trials , 2002, Journal of medical ethics.

[110]  K. Cox.  Enhancing cancer clinical trial management: recommendations from a qualitative study of trial participants' experiences , 2000, Psycho-oncology.

[111]  Giselle Corbie-Smith,et al.  Attitudes and beliefs of african americans toward participation in medical research , 1999, Journal of General Internal Medicine.

[112]  P. Butow,et al.  Focus group interviews examining attitudes to randomised trials among breast cancer patients and the general community , 1998, Australian and New Zealand journal of public health.

[113]  A. Bleyer,et al.  The Role of Clinical Trial Participation in Cancer Research: Barriers, Evidence, and Strategies. , 2016, American Society of Clinical Oncology educational book. American Society of Clinical Oncology. Annual Meeting.

[114]  S. Meneguin,et al.  Perception of the informed consent form by participants in clinical trials. , 2014, Investigacion y educacion en enfermeria.

[115]  C. Spino,et al.  Pelvic floor disorders clinical trials: participant recruitment and retention , 2012, International Urogynecology Journal.

[116]  A. Costello,et al.  A qualitative assessment of the experience of participating in a cancer-related clinical trial , 2009, Supportive Care in Cancer.

[117]  G. Hughes,et al.  Prostate cancer community collaboration and partnership: education, awareness, recruitment, and outreach to southern African-American males. , 2007, Journal of cultural diversity.

[118]  C. Coyne,et al.  Rural cancer patients' perspectives on clinical trials: a qualitative study. , 2004, Journal of cancer education : the official journal of the American Association for Cancer Education.

[119]  M. Fouad,et al.  Retention of under-served women in clinical trials: a focus group study. , 2003, Ethnicity & disease.

[120]  C. Burnett,et al.  Factors that influence a patient's decision to participate in a phase I cancer clinical trial. , 2000, Oncology nursing forum.