Nancy J. Norton
Nancy Norton is a prominent advocate for the study and treatment of functional gastrointestinal and motility disorders.
Since 1991, she has worked to present the perspective of patients and their needs to the health care community.
On behalf of IFFGD, she organized the biennial International Symposium on Functional Gastrointestinal Disorders, a forum for international experts. Ms. Norton has provided testimony to the U.S. Senate and House of Representatives Appropriation Subcommittees on Labor, Health and Human Services, and Education.
Nancy Norton served as the DDNC’s Chairperson for a number of years. The DDNC actively works to shape health policy through sustained advocacy and outreach, and hosts a two-day public policy forum on Capitol Hill each year.
Alliance for a Stronger FDA – The IFFGD was one of the first organizations to sound the alarm over the lack of resources at FDA and is proud to work through the Alliance for a Stronger FDA to address this issue. The Alliance for a Stronger FDA unites a broad group of patient groups, consumer advocates, biomedical research advocates health professionals and industry to work to increase FDA‘s appropriations. It is supported by leading public health advocates, including three former HHS Secretaries and seven FDA Commissioners. The Alliance is designed to be a multi-year effort to (1) assure the FDA has sufficient resources to protect patients and consumers and (2) maintain public confidence and trust in the FDA.
National Commission on Digestive Diseases – In April 2006 IFFGD Nancy Norton was one of sixteen members appointed to the National Commission on Digestive Diseases (NCDD). Then Director of the NIH, Dr. Elias A. Zerhouni, established the NCDD based on the mutual interest in advancing digestive diseases research shared by the NIH and the Congress. The charge of the Commission was to create a long-range research plan for digestive diseases based on the state-of-the-science and the related NIH research portfolios. The final research plan, Opportunities and Challenges in Digestive Disease Research: Recommendations of the National Commission on Digestive Diseases contains numerous recommendations for advancing functional GI and motility disorders research and is now available here.
National Institute of Diabetes and Digestive and Kidney Diseases – In October 2001, Nancy Norton was appointed by the NIH Director to a 4-year term on the National Diabetes and Digestive and Kidney Diseases Advisory Council, the advisory body of NIH’s National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). This council serves to advise NIDDK about its research portfolio, and to take second-level peer review of research grant applications that have been scored by initial review groups. Council members also serve as liaisons between the research communities they represent and the NIDDK.
Nancy Norton addresses colleagues at the National Institutes of Health.
Office of Research on Women’s Health – In March 2006 Nancy Norton was appointed by the NIH Director to a 4-year term on the eighteen member Advisory Committee on Research on Women’s Health, the advisory body of the NIH’s Office of Research on Women’s Health (ORWH). The NIH Revitalization Act of 1993 charges the Committee with advising the Director of ORWH on appropriate research activities to be undertaken by the national research institutes with respect to women’s health research. Committee members are actively involved in reviewing research priorities, the women’s health research portfolio for NIH, and the inclusion of women and minorities in clinical research.
Ms. Norton serves in several prominent professional societies, providing a voice on behalf of patients. Her roles have included:
- Member, Patient Reported Outcomes (PRO) Consortium, IBS Working Group, Critical Path Institute. Term: 2009–2017.
- Commissioner, National Commission on Digestive Diseases, National Institutes of Health (NIH). Term: 2006–2008.
Presenter, National Institutes of Health (NIH) State-of-the-Science Conference on Prevention of Fecal and Urinary Incontinence in Adults, addressing The Impact of Fecal and Urinary Incontinence on Health Consumers – Barriers on Diagnosis and Treatment – The Patient’s Perspective. December 10–12, 2007.
- Member, Advisory Committee to the Director of the Office of Research on Women’s Health (ACRWH), National Institutes of Health (NIH). Term: 2006 to 2010
- Committee Member. Rome III: The Functional Gastrointestinal Disorders. Working Team on Gender, Age, Society, Culture, and the Patient’s Perspective
- Planning Committee. Endpoints and Outcomes Conference 2009: Optimizing Clinical Trials in FGID. Rome Foundation.
- Committee Member. Rome Working Team on Severity.
- Planning Committee, NIH State-of-the-Science Conference: Cesarean Delivery on Maternal Request.
- Council Member, NIH National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Advisory Council Term: 2001 to 2005
- Chair, Digestive Disease National Coalition (DDNC) 1997–2007
- Panel Member, NIH State-of-the-Science Conference, Endoscopic Retrograde Cholangiopancreatography (ERCP) for Diagnosis and Therapy
- Council Member, National Digestive Disease Information Clearinghouse (NDDIC)
- Committee Member, Institute for Clinical Research and Education, American College of Gastroenterology (ACG)
- Ex-Officio Executive Committee Member, Functional Brain-Gut Research Group (FBG)
- Advisory Board Member, UNC Center for Functional GI & Motility Disorders
- Advisory Board Member, Simon Foundation for Continence
Ms. Norton has worked on many research studies as well as contributions to books and reviews aimed at improving health and daily living for people affected by functional GI and motility disorders.
- Kurlander JE, Chey WD, Morris CB, Hu YJB, Padival RK, Bangdiwala SI, Norton NJ, Norton WF, Drossman DA. Development and validation of the Patient-Physician Relationship Scale among patients with irritable bowel syndrome. Neurogastroenterol Motil. 2017 Oct;29(10):1-8.
- Yu D, Ramsey FV, Norton WF, Norton N, Schneck S, Gaetano T, Parkman HP. The burdens, concerns, and quality of life of patients with gastroparesis. Dig Dis Sci. 2017 Jan 21. doi: 10.1007/s10620-017-4456-7.
- Norton NJ. Functional bowel disorders: a patient’s perspective. Am J Gastroenterol. 2016 Apr;111(4):451-1.
- Dorn SD, Morris CB, Schneck SE, Hopper TM, Hu YJ, Kelapure R, Weinland SR, Norton WF, Norton NJ, Drossman DA. Development and validation of the irritable bowel syndrome satisfaction with care scale. Clin Gastroenterol Hepatol. 2011 Dec;9(12):1065-71.e1-2. Epub 2011 Aug 18.
- Parkman HP, Camilleri M, Farrugia G, McCallum RW, Bharucha AE, Mayer EA, Tack JF, Spiller R, Horowitz M, Vinik AI, Galligan JJ, Pasricha PJ, Kuo B, Szarka LA, Marciani L, Jones K, Parrish CR, Sandroni P, Abell T, Ordog T, Hasler W, Koch KL, Sanders K, Norton NJ, Hamilton F. Gastroparesis and functional dyspepsia: excerpts from the AGA/ANMS meeting. Neurogastroenterol Motil. 2010 Feb;22(2):113-33. Epub 2009 Dec 9. Review.
- Halpert A, Dalton CB, Palsson O, Morris C, Hu Y, Bangdiwala S, Hankins J, Norton N, Drossman DA. Irritable bowel syndrome patients’ ideal expectations and recent experiences with healthcare providers: a national survey. Dig Dis Sci. 2010 Feb;55(2):375-83. Epub 2009 Jun 10.
- Drossman D.A., Morris C.B., Schneck S., Hu Y.J.B., Norton N.J., Norton W.F., Weinland S., Dalton C., Leserman J., Bangdiwala S.I. International survey of patients with IBS: Symptom features and their severity, health status,treatments, and risk taking to achieve clinical benefit. J Clin Gastroenterol.2009 Jul;43(6):541-50.
- Drossman D.A., Chang L., Schneck S., Blackman C., Norton W.F., Norton N.J. A focus group assessment of patient perspectives on irritable bowel syndrome and illness severity. Dig Dis Sci. 2009 Apr 1.
- Norton N.J.. Foreword: A Patient’s View. In Thompson WG. Understanding the Irritable Gut: The Functional Gastrointestinal Disorders. McLean VA, Degnon Associates, 2008.
- Chang L., Toner B.B., Fukudo S., Guthrie E., Locke G.R., Norton N.J., Sperber A.D., Gender, Age, Society, Culture, and the Patient’s Perspective in the Functional Gastrointestinal Disorders, in Drossman DA (sr ed): Rome III: The Functional Gastrointestinal Disorders, Degnon Associates, Inc. 2006, Ch. 5, pp. 232-237.
- Chang L., Toner B.B., Fukudo S., Guthrie E., Locke G.R., Norton N.J., Sperber A.D. Gender, Age, Society, Culture, and the Patient’s Perspective in the Functional Gastrointestinal Disorders. Gastroenterology. 2006 May; 130(5):1435-1446.
- Drossman DA, Chang L, Bellamy N, Gallo-Torres HE, Lembo A, Mearin F, Norton NJ, Whorwell P. Severity in irritable bowel syndrome: a Rome Foundation working team report. Am J Gastroenterol. 2011 Jul 12. doi: 10.1038/ajg.2011.201. [Epub]
- Norton, N.J., The Perspective of the Patient. Gastroenterology 2004 Jan;126(1 Suppl 1):S175-9.
- Whitehead W.E., Wald A., Norton N.J. Priorities for treatment research from different professional perspectives: Gastroenterology. 2004 Jan;126(1 Suppl 1):S180-5.
- Whitehead W.E., Norton N.J., Wald A. Introduction. Advancing the treatment of fecal and urinary incontinence through research. Gastroenterology. 2004 Jan;126(1 Suppl 1):S1-2.
- Cohen S, Bacon BR, Berlin JA, Fleischer D, Hecht GA, Loehrer PJ Sr, McNair AE Jr, Mulholland M, Norton NJ, Rabeneck L, Ransohoff DF, Sonnenberg A, Vannier MW. National Institutes of Health State-of-the-Science Conference Statement: ERCP for diagnosis and therapy, January 14-16, 2002. Gastrointest Endosc. 2002 Dec;56(6):803-9.
- Whitehead, W., Wald, A., Norton, N., Treatment Options for Fecal Incontinence: A Consensus Conference Report, Diseases of the Colon and Rectum. Vol. 44, No. 1, 131-142, 2001.
- Norton, N.J., The Patient Experience, Functional GI Disorders, Irritable Bowel Syndrome. Part 1, Nosology, Epidemiology, and Pathophysiology. American Digestive Health Foundation, 1999.
- Norton, N.J., Patient Advocacy and Self-help Groups, in Olden. K.W. (ed): Handbook of Functional Gastrointestinal Disorders, Marcel Dekkar, Inc. 1996, Ch. 14, pp. 329-336.
- Nelson, R., Norton, N., Cautley, E., Furner, S., Community-Based Prevalence of Anal Incontinence, Journal of the American Medical Association. Vol. 274, No. 7, 559-561, 1995.
- Norton, N.J., Epilogue, in Schuster, M.M. and Wehmueller, J., Keeping Control – Understanding and Overcoming Fecal Incontinence, Johns Hopkins University Press, 1994, pg. 137-146.