NDDIC News

NDDIC Coordinating Panel Meeting Focuses on Internet Health Information

At the National Digestive Diseases Information Clearinghouse's (NDDIC's) annual Coordinating Panel meeting in June 2003, participants heard from guest speaker Carol Svec, author of After Any Diagnosis: How to Take Action Against Your Illness Using the Best and Most Current Medical Information Available. Ms. Svec discussed the Internet, an evolving resource that plays an increasingly significant role in the lives of patients seeking to understand their illnesses, and explained what many consumers are looking for online. She also offered advice to panel members on how to create effective websites for consumers.

NDDIC Director Kathy Kranzfelder updated participants on clearinghouse activities over the past year. Five new publications were developed: fact sheets on Barrett's Esophagus and Viral Gastroenteritis and easy-to-read booklets about peptic ulcers, colon polyps, and liver transplantation. She noted that the clearinghouse responded to more than 10,000 inquiries and that the number of email inquiries has more than tripled over the past year, bringing the total to 4,950. These figures underscore the Internet's importance in reaching consumers.

Dr. Stephen James updated panel members on activities of the Division of Digestive Diseases and Nutrition (DDN) at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), beginning with the newly established Liver Disease Research Branch, directed by Dr. Jay Hoofnagle. Dr. James discussed current initiatives for research funding, which include the following:

• HALT-C—a long-term study on hepatitis C
  
  
• Virahep-C—a clinical trial of peginterferon and ribavirin combination therapy
  
  
• Recurrent hepatitis B after liver transplantation
  
  
• Long-term followup of the NIDDK Liver Transplantation Database
  
  
• Nonalcoholic Steatohepatitis (NASH) Clinical Research Network
  
  
• Biliary Atresia Clinical Research Network
  
  
• Adult-to-adult living donor liver transplant
  
  
• LOOK AHEAD (Action for Health in Diabetes)
  
  
• CORI
  
  
• Genome anatomy projects
  
  
• IBD Genetics Consortium

Current requests for applications for investigator-initiated research project grants include

• Bariatric surgery
  
  
• Hepatitis C
  
  
• Digestive diseases core centers
  
  
• Genetic modifiers of Mendelian diseases

Dr. Hoofnagle introduced panel members to the Liver Diseases Research Branch. For details of the new branch's missions and action plans, see New NIDDK Branch Focuses on Liver Disease.

The final portion of the meeting consisted of reports about the organizations that make up the panel. Participants from the following organizations each took a few moments to tell the panel about their organization's activities over the past year.

• American College of Gastroenterology
  
  
• American Dietetic Association
  
  
• American Society for Gastrointestinal Endoscopy
  
  
• American Society of Colon and Rectal Surgeons
  
  
• Celiac Sprue Association/U.S.A., Inc.
  
  
• Crohn's and Colitis Foundation of America
  
  
• Celiac Disease Foundation
  
  
• Gluten Intolerance Group
  
  
• Hepatitis Foundation International
  
  
• International Foundation for Functional Gastrointestinal Disorders
  
  
• North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition
  
  
• Oley Foundation
  
  
• United Network for Organ Sharing
  
  
• United Ostomy Association

The NDDIC would like to thank each of these organizations for their continued input and insights.

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NIH Publication No. 04–4552
May 2004