Research Involvement in a Group of Registered Dietitian Nutritionists Specializing in Ketogenic Diet Therapies for Epilepsy



      There is a growing need for studies on ketogenic diet (KD) therapies. Registered dietitian nutritionists (RDNs) should lead efforts to better understand the nutritional risks and benefits of the KD to inform evidence-based practices.


      The purpose of this study was to explore participation in research among RDNs practicing in KD therapies for epilepsy and identify barriers to participation.


      This cross-sectional study collected professional experience, research involvement and output, and perceived barriers to conducting research.


      This study surveyed 66 RDNs practicing in KD therapies for epilepsy.

      Main outcome measure

      Research involvement was assessed using the Dietitian Research Involvement Survey score. Research output was reported as type and number of publications. Barriers to research included lack of time, resources, administrative support, training, and/or skill.

      Statistical analyses

      Data were summarized using descriptive statistics, such as means and SDs, medians and interquartile ranges, counts and percentages, as appropriate.


      The median Dietitian Research Involvement Survey score was 31 out of 60 (range, 16 to 60). Thirty-two participants (48.5%) reported publishing or presenting data, and only 13.6% published an article on ketogenic diet therapies as a leading author. The main barriers to participating in research were insufficient time (83.3%), insufficient funding (81.8%), and priority of work (70.8%). Research involvement scores were not affected by lack of time and resources; however, scores were lower in RDNs reporting lack of interest, training, and skill in research.


      Although ketogenic RDNs participated in research, most were not leading projects or publications. To increase research involvement among RDNs, focus should include overcoming structural barriers and facilitating knowledge acquisition for those lower on the research continuum.


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        • Research
        Academy of Nutrition and Dietetics.
        (Published 2021)
        Date accessed: February 24, 2021
        • Byham-Gray L.D.
        • Gilbride J.A.
        • Dixon L.B.
        • Stage F.K.
        Predictors for research involvement among registered dietitians.
        J Am Diet Assoc. 2006; 106: 2008-2015
        • Kverneland M.
        • Molteberg E.
        • Iversen P.O.
        • et al.
        Effect of modified Atkins diet in adults with drug-resistant focal epilepsy: A randomized clinical trial.
        Epilepsia. 2018; 59: 1567-1576
        • Lambrechts D.A.
        • de Kinderen R.J.
        • Vles J.S.
        • de Louw A.J.
        • Aldenkamp A.P.
        • Majoie H.J.
        A randomized controlled trial of the ketogenic diet in refractory childhood epilepsy.
        Acta Neurol Scand. 2017; 135: 231-239
        • Sourbron J.
        • Klinkenberg S.
        • van Kuijk S.M.J.
        • et al.
        Ketogenic diet for the treatment of pediatric epilepsy: Review and meta-analysis.
        Childs Nerv Syst. 2020; 36: 1099-1109
        • Elsakka A.M.A.
        • Bary M.A.
        • Abdelzaher E.
        • et al.
        Management of glioblastoma multiforme in a patient treated with ketogenic metabolic therapy and modified standard of care: A 24-month follow-up.
        Front Nutr. 2018; 5: 20
        • Zahra A.
        • Fath M.A.
        • Opat E.
        • et al.
        Consuming a ketogenic diet while receiving radiation and chemotherapy for locally advanced lung cancer and pancreatic cancer: The University of Iowa experience of two phase 1 clinical trials.
        Radiat Res. 2017; 187: 743-754
        • Ota M.
        • Matsuo J.
        • Ishida I.
        • et al.
        Effects of a medium-chain triglyceride-based ketogenic formula on cognitive function in patients with mild-to-moderate Alzheimer's disease.
        Neurosci Lett. 2019; 690: 232-236
        • Torosyan N.
        • Sethanandha C.
        • Grill J.D.
        • et al.
        Changes in regional cerebral blood flow associated with a 45 day course of the ketogenic agent, caprylidene, in patients with mild to moderate Alzheimer's disease: Results of a randomized, double-blinded, pilot study.
        Exp Gerontol. 2018; 111: 118-121
        • Blackford R.
        Not your parents' ketogenic diet - Flexibility in 2020.
        Epilepsy Res. 2020; 162: 106307
        • Roehl K.
        • Sewak S.L.
        Practice Paper of the Academy of Nutrition and Dietetics: Classic and modified ketogenic diets for treatment of epilepsy.
        J Acad Nutr Diet. 2017; 117: 1279-1292
        • Harris P.A.
        • Taylor R.
        • Minor B.L.
        • et al.
        The REDCap Consortium: Building an international community of software platform partners.
        J Biomed Inform. 2019; 95: 103208
        • Harris P.A.
        • Taylor R.
        • Thielke R.
        • Payne J.
        • Gonzalez N.
        • Conde J.G.
        Research Electronic Data Capture (REDCap)—A metadata-driven methodology and workflow process for providing translational research informatics support.
        J Biomed Inform. 2009; 42: 377-381
      1. The Health Insurance Portability and Accountability Act of 1996. Pub L 104-191. Stat 1936 (2014).

        • King C.
        • Byham-Gray L.
        • Parrott J.S.
        • O'Sullivan Maillet J.
        • Roberts M.M.
        • Splett P.
        Applying social cognitive career theory to registered dietitian research involvement: A randomized controlled trial.
        J Allied Health. 2014; 43: 201-211
        • Wylie-Rosett J.
        • Wheeler M.
        • Krueger K.
        • Halford B.
        Opportunities for research-oriented dietitians.
        J Am Diet Assoc. 1990; 90: 1531-1534
        • Bergqvist A.G.
        • Schall J.I.
        • Stallings V.A.
        • Zemel B.S.
        Progressive bone mineral content loss in children with intractable epilepsy treated with the ketogenic diet.
        Am J Clin Nutr. 2008; 88: 1678-1684
        • Bertoli S.
        • Trentani C.
        • Ferraris C.
        • De Giorgis V.
        • Veggiotti P.
        • Tagliabue A.
        Long-term effects of a ketogenic diet on body composition and bone mineralization in GLUT-1 deficiency syndrome: A case series.
        Nutrition. 2014; 30: 726-728
        • Draaisma J.M.T.
        • Hampsink B.M.
        • Janssen M.
        • van Houdt N.B.M.
        • Linders E.
        • Willemsen M.A.
        The ketogenic diet and its effect on bone mineral density: A retrospective observational cohort study.
        Neuropediatrics. 2019; 50: 353-358
        • Simm P.J.
        • Bicknell-Royle J.
        • Lawrie J.
        • et al.
        The effect of the ketogenic diet on the developing skeleton.
        Epilepsy Res. 2017; 136: 62-66
        • Svedlund A.
        • Hallböök T.
        • Magnusson P.
        • Dahlgren J.
        • Swolin-Eide D.
        Prospective study of growth and bone mass in Swedish children treated with the modified Atkins diet.
        Eur J Paediatr Neurol. 2019; 23: 629-638
        • Dougherty C.M.
        • Burrowes J.D.
        • Hand R.K.
        Why registered dietitian nutritionists are not doing research-perceptions, barriers, and participation in research from the Academy's Dietetics Practice-Based Research Network Needs Assessment Survey.
        J Acad Nutr Diet. 2015; 115: 1001-1007
        • Chrencik E.
        • Xu R.
        • Neal T.
        • Steiber A.
        Renal dietitians' self-perceptions on research participation: A pilot study.
        J Ren Nutr. 2008; 18: 389-392
        • Kossoff E.H.
        • Zupec-Kania B.A.
        • Auvin S.
        • et al.
        Optimal clinical management of children receiving dietary therapies for epilepsy: Updated recommendations of the International Ketogenic Diet Study Group.
        Epilepsia Open. 2018; 3: 175-192
        • Howard A.J.
        • Ferguson M.
        • Wilkinson P.
        • Campbell K.L.
        Involvement in research activities and factors influencing research capacity among dietitians.
        J Hum Nutr Diet. 2013; 26: 180-187
        • Electronic Nutrition Care Process Terminology
        A Standardized Terminology to Ensure Optimal Nutrition Care. Academy of Nutrition and Dietetics.
        Date accessed: July 28, 2021
      2. Sustaining teaching hospitals. Association of American Medical Colleges.
        (Updated 2021)
        • Paget S.P.
        • Lilischkis K.J.
        • Morrow A.M.
        • Caldwell P.H.
        Embedding research in clinical practice: Differences in attitudes to research participation among clinicians in a tertiary teaching hospital.
        Intern Med J. 2014; 44: 86-89
        • Boyd M.
        • Gall S.B.
        • Rothpletz-Puglia P.
        • Parrott J.S.
        • King C.
        • Byham-Gray L.
        Characteristics and drivers of the registered dietitian nutritionist's sustained involvement in clinical research activities: A mixed methods study.
        J Acad Nutr Diet. 2019; 119: 2099-2108
        • Nutrition Research Network
        Academy of Nutrition and Dietetics.


      J. Lowe is a researcher and clinical dietitian, Department of Neurology, Keck School of Medicine, University of Southern California, Los Angeles.


      J. Brown is a clinical dietitian, Clinical Nutrition and Lactation, Children’s Hospital of Orange County, Orange, California.


      K. Klier is a clinical dietitian, Children's Hospital Los Angeles, Los Angeles, CA.


      J. D. White is a clinical dietitian, UCLA Ronald Reagan Medical Center, Mattel Children's Hospital at University of California Los Angeles, Los Angeles.


      L. Briceno Alliegro is a clinical dietitian, Children's Hospital Los Angeles, Los Angeles, CA.


      S. Sewak is a clinical dietitian, University of California Los Angeles Ronald Reagan Medical Center, Mattel Children's Hospital at University of California Los Angeles, Los Angeles.


      D. Mele-Hayes is a consultant dietitian, My Keto Weigh, Torrance, CA.