{"id":823,"date":"2023-03-07T22:11:20","date_gmt":"2023-03-07T22:11:20","guid":{"rendered":"https:\/\/lab.research.sickkids.ca\/cohen\/?page_id=823"},"modified":"2026-05-20T17:36:21","modified_gmt":"2026-05-20T17:36:21","slug":"research","status":"publish","type":"page","link":"https:\/\/lab.research.sickkids.ca\/cohen\/research\/","title":{"rendered":"Research"},"content":{"rendered":"

Current research projects<\/h2><\/div>

Selected projects and publications are featured below and do not represent a comprehensive list of all lab activities. To view a full list of publications, visit our Google Scholar<\/a>.<\/p>\n<\/div>

<\/i><\/span><\/div>

Transition to Adult Care<\/h3><\/div>
<\/div>
\n

Promoting Intensive Transitions for Children and Youth with Medical Complexity from Pediatric to Adult Care (PITCare)<\/h3>\n

Medical advances have allowed many more Children and youth with medical complexity (CMC) to survive well into adulthood. However, this has not been matched with increases in availability of supports as they transition into the adult care system. The study aim of PITCare is to assess whether intensive transition support led by an advance practice nurse during transition to adult care for 2 years will improve continuity of care, compared to usual care in CMC. The youth will be randomized to either receive intensive transition support until approximately age 19.5 or usual care until age 18. Other outcomes related to the youth\/family experience, health outcomes and the value of the intervention are being assessed quantitatively and qualitatively.<\/p>\n

Publications:<\/h4>\n

Santos, S., Thomson, D., Diaz, S., Soscia, J., Adams, S., Amin, R., Bernstein, S., Blais, B., Bruno, N., Colapinto, K., Espin, S., Fayed, N., Greenaway, J., Henze, M., Ivers, N. M., LeGrow, K., Lim, A., Lippett, R., Lunsky, Y., Macarthur, C., \u2026 Cohen, E. (2024). Promoting Intensive Transitions for Children and Youth with Medical Complexity from Paediatric to Adult Care: the PITCare study-protocol for a randomised controlled trial<\/a>. BMJ open, 14(12), e086088.<\/p>\n

Santos, S., Orkin, J., Abells, D., Allemang, B., Arenas Rodriguez, B., Colapinto, K., Constas, N., Heath, M., Henze, M., John, T., Lippett, R., Miranda, S., Soscia, J., Teicher, J., Thomson, D., Tyrrell, J., Vandepoele, E., Wentzel, K., Yates, D., … Toulany, A. (2025). Building Bridges: Developing and Implementing a New Transition to Adult Care Program for Youth with Complex Healthcare Needs at a Canadian Children\u2019s Hospital<\/a>. Children, 12(8), 1043. https:\/\/doi.org\/10.3390\/children12081043<\/p>\n

Other Work on Transition to Adult Care<\/h3>\n

We also conduct additional work evaluating transitions to adult services outside of the PITCare Trial.<\/p>\n

Publications:<\/h4>\n

Malecki, S. L., Shen, T., Loffler, A., Stukel, T. A., de Oliveira, C., Roberts, S. B., Bassett, A. S., Nelson, K. E., Razak, F., Verma, A. A., & Cohen, E. (2026). Characteristics and outcomes of adults hospitalized with childhood-onset complex chronic conditions<\/a>. JAMA Network Open, 9(1). https:\/\/doi.org\/10.1001\/jamanetworkopen.2025.53610 <\/p>\n

Malecki, S. L., DArienzo, D., Wennberg, E., Butler, E. A., Vediya, N., Vyas, M. V., McNiven, V., Cunningham, J., Stukel, T. A., Verma, A. A., Cohen, E., & Bassett, A. S. (2026). Adult outcomes of clinically relevant genomic disorders: A systematic review and meta-analysis<\/a>. Genetics in Medicine, 28(2), 101632. https:\/\/doi.org\/10.1016\/j.gim.2025.101632 <\/p>\n

Malecki, S., Cohen, E., Verma, A. A., & Bassett, A. S. (2024). Closing gaps in care and knowledge for adults with complex genetic conditions<\/a>. Canadian Medical Association Journal, 196(37). https:\/\/doi.org\/10.1503\/cmaj.240782 <\/p>\n<\/div><\/div><\/div>

<\/i><\/span><\/div>

CMC-ID: Identifying Children and Youth with Medical Complexity Using an Electronic Health Record-Sourced Data Repository<\/h3><\/div>
<\/div>
\n

This project aims to develop and validate an electronic medical record (EMR) algorithm to identify children with medical complexity (CMC), particularly those approaching transition to adult care. Using CCKO’s standard criteria for CMC, preliminary work demonstrates strong accuracy in identifying eligible youth for recruitment to a targeted intervention and performs consistently when validated in a broader set of patients. This work holds promise for broader applications in program planning, quality improvement, and population health monitoring. Ongoing efforts are focused on testing the application of the algorithm at a provincial level.<\/p>\n

Presentations:<\/h4>\n

Bruno-Boucher L, Santos S, Gill P, Sung L, Cohen E. <\/span>Identifying<\/span> children with medical complexity using an EMR-sourced data repository. <\/span>Presented at PAS, <\/span>2026.<\/span><\/span><\/span> <\/span><\/p>\n<\/div><\/div><\/div>

<\/i><\/span><\/div>

The health and financial burden outcomes of unpaid family caregivers: An analysis of the Caring in Canada Survey<\/h3><\/div>
<\/div>
\n

Unpaid caregivers are family members, friends or others who provide support for individuals who need care due to physical, cognitive, intellectual or developmental disabilities\u037e medical conditions\u037e mental illness\u037e or needs related to aging. The \u2018Caring in Canada\u2019 national caregiving survey was carried out to better understand Canada’s caregiving landscape and its effects on caregivers, including time spent on caregiving, relationships between caregivers and care recipients, caregiver well\u00adbeing and supports for caregivers. Understanding the predictors of poor health and financial burden among caregivers will help target at\u00ad risk caregivers with necessary supports to improve their outcomes, and consequently those of their care recipients.<\/p>\n

Publications:<\/h4>\n

Benjamin, H., Robibaro, F., Thomson, D., Bruno, G., Lunsky, Y., Janeiro, J., Mendelsohn, L., Stall, N. M., & Cohen, E. (2025). Exploring factors associated with the physical, mental, and financial health of unpaid caregivers: An analysis of the Canadian National Caregiving Survey<\/a>. Canadian journal of public health = Revue canadienne de sante publique, 10.17269\/s41997-025-01133-2. Advance online publication. https:\/\/doi.org\/10.17269\/s41997-025-01133-2<\/p>\n<\/div><\/div><\/div>

<\/i><\/span><\/div>

Health and subsequent pregnancy outcomes of mothers who experience infant adversity<\/h3><\/div>
<\/div>
\n

Experiencing infant adversity (stillbirth, neonatal death, severe neonatal morbidity, major congenital anomaly, prematurity, and neurologic impairment) can be a lifechanging and stressful event affecting maternal health and subsequent pregnancies. These studies aim at exploring the effects of experiencing infant adversity on subsequent maternal health, mortality risk, health-care utilization, employment status and pregnancies.<\/p>\n

Publications:<\/h4>\n

Belza, C., Szentk\u00fati, P., Horv\u00e1th-Puh\u00f3, E., Ray, J. G., Nelson, K. E., Grandi, S. M., Brown, H. K., S\u00f8rensen, H. T., & Cohen, E. (2024). Use of latent class analysis to predict intensive care unit admission and mortality in children with a major congenital anomaly.<\/a> The Journal of Pediatrics, 270, 114013.<\/p>\n

Cohen, E., Horv\u00e1th-Puh\u00f3, E., Ray, J. G., Pedersen, L., Adler, N., Ording, A. G., Wise, P. H., Milstein, A., & Toft S\u00f8rensen, H. (2016). Association between the birth of an infant with major congenital anomalies and subsequent risk of mortality in their mothers<\/a>. JAMA, 316(23), 2515.<\/p>\n

Cohen, E., Horv\u00e1th-Puh\u00f3, E., Ray, J. G., Pedersen, L., Ehrenstein, V., Adler, N., Vigod, S., Milstein, A., & S\u00f8rensen, H. T. (2018). Cardiovascular disease among women who gave birth to an infant with a major congenital anomaly<\/a>. JAMA Network Open, 1(5).<\/p>\n

Cohen, E., Szentk\u00fati, P., Horv\u00e1th-Puh\u00f3, E., Brown, H. K., Grandi, S. M., S\u00f8rensen, H. T., & Ray, J. G. (2022). Interpregnancy weight change among mothers of a child with a major congenital anomaly: A Danish nationwide Cohort Study<\/a>. Clinical Epidemiology, Volume 14, 425\u2013436.<\/p>\n

Fuller, A. E., Horv\u00e1th-Puh\u00f3, E., Ray, J. G., Ehrenstein, V., S\u00f8rensen, H. T., & Cohen, E. (2021). Mortality among parents of children with major congenital anomalies<\/a>. Pediatrics, 147(5).<\/p>\n

Kim, K. M., Farkas, D. K., Wong, V., Hjorth, C. F., Horv\u00e1th-Puh\u00f3, E., Cahan, E., Cohen, E., Shah, N. R., S\u00f8rensen, H. T., & Milstein, A. (2024). Association between maternal employment status and presence of children with major congenital anomalies in Denmark. BMC Public Health<\/a>, 24(1).<\/p>\n

Rotberg, B., Horv\u00e1th\u2010Puh\u00f3, E., Vigod, S., Ray, J. G., S\u00f8rensen, H. T., & Cohen, E. (2020). Increased maternal new\u2010onset psychiatric disorders after delivering a child with a major anomaly: A cohort study.<\/a> Acta Psychiatrica Scandinavica, 142(4), 264\u2013274.<\/p>\n<\/div><\/div><\/div>

<\/i><\/span><\/div>

Developing patient-reported outcome measures of feeding performance and satisfaction with medical devices for children with complex care needs<\/h3><\/div>
<\/div>
\n

Our team conducted a study as part of the CCKO Provincial Strategy, involving qualitative interviews with parents of children with medical complexity. The study explores \u2018feeding performance\u2019 and \u2018satisfaction with assistive technology and medical devices\u2019 in these children. Insights from these interviews will inform the development of questionnaires on \u2018feeding\u2019 and the use of medical devices.<\/p>\n

Presentations:<\/h4>\n

Fayed, N., Orkin, J., Major, N., Amin, R., Cohen, E. GEM-Tech: (2026). A \u2018General Experience Of Medical Technology\u2019 measure for caregivers and children with medical complexity (Co-CMC). ISPOR 2026.<\/span> Philadelphia, PA.<\/p>\n

Fayed, N. (2026). How Is Feeding Going? Parents talk to parents. 2026 International PFD Conference.<\/p>\n

Fayed, N., Cohen, E., Major, N. (2024). \u2018Medical Technology\u2019 and \u2018Family-Centred-Feeding\u2019 measures for caregivers of children with medical complexity (Co-CMC). Pediatric Academic Society. Toronto, Canada.<\/p>\n

Noyek, S., Fayed, N., Major, N., Orkin, J., Sidra, M., Cohen, E. (2020). Developing patient-reported outcome measures of \u2018medical technology experiences\u2019 for children with medical complexity (platform presentation). Pediatric Academic Societies Annual Meeting. Philadelphia, PA, USA.<\/p>\n

Fayed, N., Noyek, S., Major, N., Orkin, J., Sidra, M., Cohen, E. (2020) A Tool to Evaluate the Impact and Experience of Medical Technology on Complex Children and Their Caregivers (poster presentation). Children\u2019s Healthcare Canada Annual Conference (via web). Saskatchewan, Canada.<\/p>\n

Noyek, S., Fayed, N., Major, N., Orkin, J., Sidra, M., Cohen, E. (2020) Developing patient-reported outcome measures of \u2018medical technology experiences\u2019 for children with medical complexity (poster presentation). Children\u2019s Healthcare Canada Conference (via web), Saskatchewan, Canada.<\/p>\n

Fayed, N., Turner, P., McGuire, M., Atoallah, S., Cohen, E. (2019) Obtaining Content for Patient-Reported Experience Measure for Children with Medical Complexity Using Peer Interviewers. International Society for Quality of Life Research. San Diego, United States.<\/p>\n

McGuire, M., Atoallah-Eshqoor, S., Mutch, C., Fayed, N. (2018) Caregiver experiences of feeding children with medical complexity. Canadian Association of Occupational Therapy. Vancouver, Canada.<\/p>\n<\/div><\/div><\/div>

<\/i><\/span><\/div>

Child health services and health policy research<\/h3><\/div>
<\/div>
\n

Our team also conduct research on child health services and health policy, including mental health, drug policy, and other emerging health issues.<\/p>\n

Publications and lay press:<\/h4>\n

Finkelstein, Y., Komj\u00e1thin\u00e9 Sz\u00e9pligeti, S., Horv\u00e1th-Puh\u00f3, E., Pedersen, L., Freedman, S. B., S\u00f8rensen, H. T., & Cohen, E. (2026). Intoxication in children from opioids prescribed to family members<\/a>. JAMA Network Open, 9(3). https:\/\/doi.org\/10.1001\/jamanetworkopen.2026.3515<\/p>\n

Brown, H. K., Fung, K., Cohen, E., Dennis, C., Grandi, S. M., Rosella, L. C., Varner, C., Vigod, S. N., Wodchis, W. P., & Ray, J. G. (2025). Multiple chronic conditions before pregnancy and risk of adverse maternal health outcomes: Population\u2010based Cohort Study<\/a>. BJOG: An International Journal of Obstetrics & Gynaecology, 133(1), 142\u2013153. https:\/\/doi.org\/10.1111\/1471-0528.18347<\/p>\n

Ray, J. G., Fu, L., Austin, P. C., Park, A. L., Brown, H. K., Grandi, S. M., Vandermorris, A., Boblitz, A., & Cohen, E. (2024). Teen pregnancy and risk of premature mortality<\/a>. JAMA Network Open, 7(3). https:\/\/doi.org\/10.1001\/jamanetworkopen.2024.1833<\/p>\n

Saunders, N., Benjamin, H., Pechlivanoglou, P., Yang, A., Raveendran, T., Butler, E. A., Ray, J. G., Nathwani, A. A., Karanikas, A., & Cohen, E. (2026). Long-term trends in pediatric self-injury in high-income countries<\/a>. JAMA Pediatrics, 180(5), 556. https:\/\/doi.org\/10.1001\/jamapediatrics.2026.0217<\/p>\n

Ray, J. G., Cohen, E., Butler, E. A., Grandi, S., & Park, A. (2023). Indicators of cardiometabolic function in pregnancy and long-term risk of COVID-19: Population-based Cohort Study<\/a>. Cureus. https:\/\/doi.org\/10.7759\/cureus.35325<\/p>\n

The Toronto Star by Francine Kopun. \u201cYoung Canadians are increasingly turning to self-harm – but the trend is steepest among girls, study finds\u201d. March 16, 2026. https:\/\/www.thestar.com\/news\/canada\/young-canadians-are-increasingly-turning-to-self-harm-but-the-trend-is-steepest-among-girls\/article_6ed66c33-9d91-4797-aacf-f0295ad1955a.html<\/a><\/p>\n

The New York Times. \u201cTeen Pregnancy Linked to Premature Death, Study Finds\u201d. March 14, 2024. https:\/\/www.nytimes.com\/2024\/03\/14\/health\/teen-pregnancy-early-death.html<\/a><\/p>\n<\/div><\/div><\/div>

<\/div><\/div>
<\/div><\/div>
<\/div><\/div><\/div><\/div><\/div><\/div>\n","protected":false},"excerpt":{"rendered":"","protected":false},"author":363,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"100-width.php","meta":{"footnotes":""},"class_list":["post-823","page","type-page","status-publish","hentry"],"yoast_head":"\nResearch - Cohen Lab<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/lab.research.sickkids.ca\/cohen\/research\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Research\" \/>\n<meta property=\"og:url\" content=\"https:\/\/lab.research.sickkids.ca\/cohen\/research\/\" \/>\n<meta property=\"og:site_name\" content=\"Cohen Lab\" \/>\n<meta property=\"article:modified_time\" content=\"2026-05-20T17:36:21+00:00\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data1\" content=\"13 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\/\/lab.research.sickkids.ca\/cohen\/research\/\",\"url\":\"https:\/\/lab.research.sickkids.ca\/cohen\/research\/\",\"name\":\"Research - Cohen Lab\",\"isPartOf\":{\"@id\":\"https:\/\/lab.research.sickkids.ca\/cohen\/#website\"},\"datePublished\":\"2023-03-07T22:11:20+00:00\",\"dateModified\":\"2026-05-20T17:36:21+00:00\",\"breadcrumb\":{\"@id\":\"https:\/\/lab.research.sickkids.ca\/cohen\/research\/#breadcrumb\"},\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"ReadAction\",\"target\":[\"https:\/\/lab.research.sickkids.ca\/cohen\/research\/\"]}]},{\"@type\":\"BreadcrumbList\",\"@id\":\"https:\/\/lab.research.sickkids.ca\/cohen\/research\/#breadcrumb\",\"itemListElement\":[{\"@type\":\"ListItem\",\"position\":1,\"name\":\"Home\",\"item\":\"https:\/\/lab.research.sickkids.ca\/cohen\/\"},{\"@type\":\"ListItem\",\"position\":2,\"name\":\"Research\"}]},{\"@type\":\"WebSite\",\"@id\":\"https:\/\/lab.research.sickkids.ca\/cohen\/#website\",\"url\":\"https:\/\/lab.research.sickkids.ca\/cohen\/\",\"name\":\"Cohen Lab\",\"description\":\"\",\"potentialAction\":[{\"@type\":\"SearchAction\",\"target\":{\"@type\":\"EntryPoint\",\"urlTemplate\":\"https:\/\/lab.research.sickkids.ca\/cohen\/?s={search_term_string}\"},\"query-input\":{\"@type\":\"PropertyValueSpecification\",\"valueRequired\":true,\"valueName\":\"search_term_string\"}}],\"inLanguage\":\"en-US\"}]}<\/script>\n<!-- \/ Yoast SEO Premium plugin. -->","yoast_head_json":{"title":"Research - Cohen Lab","robots":{"index":"index","follow":"follow","max-snippet":"max-snippet:-1","max-image-preview":"max-image-preview:large","max-video-preview":"max-video-preview:-1"},"canonical":"https:\/\/lab.research.sickkids.ca\/cohen\/research\/","og_locale":"en_US","og_type":"article","og_title":"Research","og_url":"https:\/\/lab.research.sickkids.ca\/cohen\/research\/","og_site_name":"Cohen Lab","article_modified_time":"2026-05-20T17:36:21+00:00","twitter_card":"summary_large_image","twitter_misc":{"Est. reading time":"13 minutes"},"schema":{"@context":"https:\/\/schema.org","@graph":[{"@type":"WebPage","@id":"https:\/\/lab.research.sickkids.ca\/cohen\/research\/","url":"https:\/\/lab.research.sickkids.ca\/cohen\/research\/","name":"Research - Cohen Lab","isPartOf":{"@id":"https:\/\/lab.research.sickkids.ca\/cohen\/#website"},"datePublished":"2023-03-07T22:11:20+00:00","dateModified":"2026-05-20T17:36:21+00:00","breadcrumb":{"@id":"https:\/\/lab.research.sickkids.ca\/cohen\/research\/#breadcrumb"},"inLanguage":"en-US","potentialAction":[{"@type":"ReadAction","target":["https:\/\/lab.research.sickkids.ca\/cohen\/research\/"]}]},{"@type":"BreadcrumbList","@id":"https:\/\/lab.research.sickkids.ca\/cohen\/research\/#breadcrumb","itemListElement":[{"@type":"ListItem","position":1,"name":"Home","item":"https:\/\/lab.research.sickkids.ca\/cohen\/"},{"@type":"ListItem","position":2,"name":"Research"}]},{"@type":"WebSite","@id":"https:\/\/lab.research.sickkids.ca\/cohen\/#website","url":"https:\/\/lab.research.sickkids.ca\/cohen\/","name":"Cohen Lab","description":"","potentialAction":[{"@type":"SearchAction","target":{"@type":"EntryPoint","urlTemplate":"https:\/\/lab.research.sickkids.ca\/cohen\/?s={search_term_string}"},"query-input":{"@type":"PropertyValueSpecification","valueRequired":true,"valueName":"search_term_string"}}],"inLanguage":"en-US"}]}},"_links":{"self":[{"href":"https:\/\/lab.research.sickkids.ca\/cohen\/wp-json\/wp\/v2\/pages\/823","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/lab.research.sickkids.ca\/cohen\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/lab.research.sickkids.ca\/cohen\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/lab.research.sickkids.ca\/cohen\/wp-json\/wp\/v2\/users\/363"}],"replies":[{"embeddable":true,"href":"https:\/\/lab.research.sickkids.ca\/cohen\/wp-json\/wp\/v2\/comments?post=823"}],"version-history":[{"count":9,"href":"https:\/\/lab.research.sickkids.ca\/cohen\/wp-json\/wp\/v2\/pages\/823\/revisions"}],"predecessor-version":[{"id":1944,"href":"https:\/\/lab.research.sickkids.ca\/cohen\/wp-json\/wp\/v2\/pages\/823\/revisions\/1944"}],"wp:attachment":[{"href":"https:\/\/lab.research.sickkids.ca\/cohen\/wp-json\/wp\/v2\/media?parent=823"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}