The use of the internet in data assimilation in rare diseases.

The incidence and prevalence of achalasia is 0.6/100,000 people per year and 1/10,000, respectively. It is difficult then for one center to accumulate a large cohort of patients. One study (Gut 33:1011,1992) described the presenting symptoms in only 38 patients. To approach this problem differently, we used the internet to access a larger patient population. Using search engines at Google and Yahoo, Inc., we identified achalasia support groups. We examined the most populated support group (YSG) and assembled the exchanged messages into 4 categories: support, symptoms, treatment, and diagnosis. Next, a survey modeled after a previous study (ibid) was composed and posted on a university-sponsored Web site for March 2003, advertised to YSG members, and then removed from the server. The results were entered into a database and analyzed. There were 6 support groups identified; 1 was foreign. The most populated site was the Yahoo, Inc., group with 298 active members. We analyzed the 3,222 messages posted from October 6, 2002 through October 5, 2003. The message composition was as follows: 67% support, 16% symptoms, 12% treatment, and 5% diagnosis. Of 298 Yahoo site members, we had 88 respondents to the survey from 9 countries. The data from 83 were analyzed (5 were not completed). Respondents were 66 women (55%), 29 men (24%), and 5 non-gender-identified respondents. They ranged in age from 6 to 72 years at time of diagnosis. In the 83 respondents, dysphagia symptoms were reported by 98%, regurgitation by 68%, chest pain by 81%, weight loss by 69%, and epigastric pain by 67%, similar to those reported in the study cited in Gut. The modalities used to evaluate these achalasia patients were as follows: 83% had monometry, 87% had radiography, and 89% had endoscopy. The mean time from symptom onset to diagnosis was 5 years. The treatments attempted on this population were balloon dilatation in 57%, botulinum toxin injection (Botox) in 8%, myotomy in 12%, by lifestyle/diet modification in 12%, and other treatments in 11%. We believe that the Internet can provide physician-researchers with useful information about common and uncommon diseases on a global basis. The Internet allows patients to voice concerns that they may not freely express to their doctor and provides a modality to collect data from a larger number of patients than may be available at any single institution.

Post-sphincterotomy bleeding after the introduction of microprocessor-controlled electrosurgery: does the new technology make the difference?

BACKGROUND: Bleeding as a complication of endoscopic sphincterotomy is influenced by several factors. The objective of this study was to compare rates of bleeding after sphincterotomy performed with two different electrosurgical current generators (Valleylab SSE2L and ERBE ICC200). METHODS: A total of 6179 consecutive reports of ERCP were analyzed to compare the frequency of endoscopically and clinically evident bleeding after sphincterotomy when using the Valleylab SSE2L generator (from February 1994 to November 1997) and the ERBE ICC200 generator (from December 1997 to September 2000). Relevant risk factors were assessed by univariate analysis and significant predictors were included in a multiple logistic regression model. RESULTS: A total of 2711 sphincterotomies were performed in 2309 patients (1749 biliary, 962 pancreatic). Endoscopically observed bleeding occurred in 68 patients (5.5%) in the ValleyLab group and 13 (1.2%) in the ERBE group. The ValleyLab generator was independently associated with an increase in endoscopically observed bleeding (OR 4.02: 95% CI[2.13, 7.61], p <0.001). There was no significant difference in clinically evident bleeding between the two groups. CONCLUSIONS: Use of the microprocessor-controlled ERBE electrosurgical generator for endoscopic sphincterotomy was associated with a significantly lower frequency of endoscopically observed bleeding but not clinically evident bleeding.