UBPN Registry

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Joined: Thu Nov 08, 2001 5:54 pm

UBPN Registry

Post by TNT1999 » Thu Jun 09, 2005 12:04 pm

I think it is great that there is a registry and that we can select how much / little info. we want to put there. I'm someone who is very hesitant to put TMI online anywhere esp. if it's not secure. Is there any way to have the registry section be a secured area? Also, is there any way to have it set up so that not just anyone who visits the site can view entries, but only people who have signed in somewhere? These are prob. not quick things to do, I have no idea. I'm really surprised at how many people are comfortable putting so much personal info. on already, but also feel that there might likely be even a bigger turnout if the area was more secured and limited. Just sharing my thoughts.


Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: UBPN Registry

Post by Kath » Thu Jun 09, 2005 4:32 pm

Thanks for putting out your thoughts. I am not the web expert but you are making some very important points.
see you at camp
Kath robpi/adult

Kathleen Mallozzi

Posts: 1806
Joined: Wed Oct 24, 2001 10:09 pm

Re: UBPN Registry

Post by njbirk » Thu Jun 09, 2005 6:18 pm

Hi Tina,

These are good questions and important concerns. One has to balance the openness of information with the desire to allow people to find and communicate with each other.

We looked very carefully at designing the registry so that it is completely user driven, which is why we have it set up so that the individual entering data can decide how much or how little information to make public.

One can also go back in and make changes and either restrict or release more or less information.

It is on a secure server. UBPN owns the server. It does not share space with anything else nor is it part of any other company.


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