The Importance of Advocacy Organizations Funding Research

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The National Eating Disorders Association, known as NEDA, included something new in its annual conference this year.

Meeting in San Diego, California, the national advocacy organization dedicated to improving the lives of those afflicted with eating disorders and their families invited a panel of clinical researchers, each of whom had received a research grant from NEDA’s “Feeding Hope” fund, to speak. The goal of these types of grants is to support projects related to eating disorders treatment. The financial support enables researchers to, for example, develop innovative treatments or to study the dissemination of an existing evidence-based treatment.

Awardees included on this year’s panel were:

  • Daniel Le Grange, Professor of Psychiatry at University of California San Francisco;
  • Denise Wilfley, Professor of Psychiatry at Washington University St. Louis;
  • Christina Wierenga, Associate Professor of Psychiatry at University of California San Diego; and
  • Joanna Steinglass, Associate Professor of Psychiatry at Columbia University Medical Center.

Dr. Le Grange is well known for his work in developing and studying the efficacy of family-based therapy (FBT) for anorexia nervosa. He discussed with the audience the data supporting the utility of this treatment for adolescents. He underscored the need to make this treatment more available to more people, especially those individuals who may live in regions that are a great distance away from the ivory tower academic institutions where the treatment is typically delivered. Together with his colleagues, Dr. Le Grange developed a version of FBT that may be delivered using video conferencing so that families may access the treatment from their living rooms, wherever they may live. In an initial trial, patients and their families found the treatment acceptable and remained in the treatment for the duration of the program.

Dr. Wilfley presented results from her study in which she developed a program to disseminate interpersonal therapy (IPT) for eating disorders and associated conditions by training college mental health service clinicians to deliver the evidence-based treatment. The program trains trainers who then train clinicians within the university setting. The results were more mixed with evidence that the student health clinicians enjoy receiving IPT training but, in audiotaped sessions, do not consistently use valid IPT interventions in their sessions following training.

Dr. Wierenga presented results from a trial of family-based therapy for anorexia nervosa administered in an intensive multi-family group format. Patients and families who participated in this study engaged in one week of intensive treatment together with several other families. Goals of the 40-hour intervention included training families to re-feed their affected children and beginning the process of weight restoration.

Dr. Steinglass, from our Center, presented a new hypothesis for the mechanism underlying anorexia nervosa, suggesting that the illness becomes entrenched because the core behaviors become habits, controlled by a particular brain circuit. She showed data supporting that food choice is controlled by habit circuits in individuals with anorexia nervosa, but not in individuals who are healthy. She described the preliminary steps that our group is taking to develop and test a multi-faceted behavioral therapy called Regulating Emotion And Changing Habits (REACH).

Together with improved awareness and better treatment access, research support is part of the core mission of most advocacy organizations that aim to improve the lives of sufferers affected by specific illnesses. Organizations such as the American Cancer Society, Juvenile Diabetes Association and Brain & Behavior Research Society (formerly NARSAD) budget several million dollars to support research, and scientific advances have resulted from these efforts. NEDA fairly recently decided to join these other advocacy organizations in identifying funds for research. Though the steps have been taken slowly — $100,000 awards to each of two awardees each of the last two years and two new awardees announced this week – they are critical to our field’s continued scientific discovery.

It is my hope that NEDA’s support of small research projects and the invitation of recent awardees to join NEDA’s annual conference for the first time will enable big advancements in knowledge and foster an open line of communication between researchers, clinicians, patients and their families. Going forward, I also hope that NEDA and its supporters will be able to make an even larger commitment to research and help us towards the shared goal of a more completed understanding of these brain-based disorders and their cure.

Evelyn Attia, MD

I am a psychiatrist at Columbia and Weill Cornell Medical Centers and have spent the last 30+ years working to improve our understanding of eating disorders and develop effective treatments.

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