RO, AK and WS participated in the data collection and provided suggestions for manuscript revision.
It has resulted in clarification of inclusion criteria, data collection procedures, and suggestions for additional strategies for recruitment and retention.
It has resulted in clarification of inclusion criteria and data collection procedures and suggestions for additional sites for recruitment.
Unfortunately, selenium and carnitine levels were not obtained for any of our affected patients, as much of our data collection preceded any suggestion within the literature that cardiac complications might arise in the setting of EB, or that selenium or carnitine deficiencies might play a pathological role in this disease.
The pre-publication history for this paper can be accessed here: http://www.biomedcentral.com/1471-244X/14/18/prepub The authors thank Hong-Li Peng for her assistance with data collection, Li-Lin Rao, Xing-Shan Li and Yin Su for their suggestions on data analyses, and Drs. Rhoda E. Perozzi and Edmund F. Perozzi for English and content editing assistance.
Case manager recruiters and interviewers met monthly with the principal investigator to clarify recruitment and data collection procedures, identify problems, and make suggestions for improvement.
In compiling our tables we have been advised along the way by a review group of experts from UK universities, whose members have made critical comments and practical suggestions for improving our data collection.
SRS and GSB participated in the data collection, critically reviewed the manuscript, and provided suggestions for manuscript revision.
Suggestions for improvements of data collection included the possibility of later data entry (22% of comments) as well as improvements of the content (30%) and layout (11%) of the quality data window (see Additional file 2).
Following this closing, the facilitator and note-taker conducted a debriefing exercise, whereby the researchers confirmed the seating arrangement and associated coding of the participants, reflected on participant responses and finally any suggestions for improving subsequent data collection events.
