Guest guest Posted October 15, 2003 Report Share Posted October 15, 2003 Hi Kent/Sally that would be great! What kind of database do you use? What fields do you use? I definitly think we should consider the privicy of the persons registrated. Although, I also think some people in the group wouldn't be to happy putting all the info anywhere? Maybe we can do a poll? There is a Polls possiblity on the group site. If a majority is interested the info can be put together with the relevant info obtained from Kent, via a questionnaire to be filled in like the one you proposed Sally. Perhaps the results can be sevnt by snail mail (makes it more difficult to spread around to third parties...) to those who entered the questionnaire? And perhaps we could make it possible for other people to ask a copy via The BPES family network? but under which conditions? What is signed consents? We could do an update once a year? The update could include new members and new related questions? It would make sense to use actual dates - instead of age/operation/diagnosis dates in years - that way you won't have to change it with very update! I am very interested in a question added for the unaffected parents : how frequent they had encounters (also before! pregnancy) with volatile (?) products or other mutative products like cleaning or painting material… as you can notice I don't know the correct terminology here… I also don't have an answer how to quantify the answer to this question… does anyone have a suggestion? Another question would be at what age which operations took place by whom. Other questions I have probably are in Kent's database. Bernice > > > I would be willing to do this if you all can help with what exactly to > > put in the database as far as siblings affected, infertility > > questions, left eye smaller?, etc. I won't be able to work on it all > > day everyday, but i do have a couple of days off work and some > > evenings free where i could go throught the old post and get info. > > > > > > > > > > > > > > Hey Group, > > > > It seems like we are all interested in the details in each others' > > BPES cases… siblings affected, infertility questions, left eye > > smaller, # of surgeries and types, etc.. > > > > Would it be worth the time and would anyone be interested in starting > > a database to collect information about our chat group? This might be > > a treasure of information for doctors, researchers and at least us > > moms, dads, and adults with BPES. > > > > I got the idea from reading the recent letters about siblings and how > > we are all wondering the same questions of our group. > > > > Unfortunately, I am not a computer expert, but maybe there is someone > > out there with the interest and expertise that would like to do this? > > > > Just an idea… > > > > > > > > Have a great day everyone! > > > > 's Mom (4 yr old in Iowa, USA) Sheila > > > > > > > <image.tiff> > > > > > > Quote Link to comment Share on other sites More sharing options...
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