REGISTRY EAZY PEAZY
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- This topic has 10 replies, 7 voices, and was last updated 8 years, 9 months ago by gavin.
June 28, 2014 at 5:55 am #83362gavinModerator
Done! Took about 20 minutes or so and 2 cups of tea before breakfast! Didn’t have my dads medical records in front of me, we don’t have them but the registry was very easy to follow and I didn’t need them here anyway. Knew all of the meds, tests and procedures he had so that was okay.
To all, please, please take a small amount of time to complete this as your help will be invaluable to researchers in the fight against CC. We will get there but we need your help!
Hugs to all,
GavinJune 28, 2014 at 3:46 am #83361
YIPPEE! Come on CC Family, you can do it!!!! What a fantabulous family you all are! Kudos, Applause, Awards, you are the best!June 28, 2014 at 3:12 am #83360darlaSpectator
Duke, I agree. No surprises there. I wasn’t surprised to see that the highest incidence at this point is in the 60-69 age group.June 28, 2014 at 3:02 am #83359marionsModerator
Duke: Acrobat (pdf) can be uploadedJune 28, 2014 at 2:57 am #83358
Kris, you crack me up! I just came back from Wally World (WalMart) and I use the electric cart as its such a huge store. Those carts are really dangerous but I only knocked in to 2 people today and 1 display! Kidding!June 28, 2014 at 2:47 am #83357dukenukemMember
I agree that registration is easy.
Plus, there are results already available. Patience is required to wade through it. No obvious “Ah Ha’s” but did not expect any. Only 89 responders so far. It will take time.
What are they looking for in the way of lab reports? If I can get my onc to put everything into a PDF file, can I just upload that? Or is that something to be added later?
DukeJune 28, 2014 at 2:25 am #83356darlaSpectator
Just finished up and agree it was easy.June 28, 2014 at 2:25 am #83355kvollandSpectator
No, you won’t needs scans, labs or any of that to do the process. During the initial process you just basically have to know what went on. What were the first symptoms? How was it diagnosed (ie CT scan, MRI, lab, etc)? What stage? What treatments have been done? And then a review of risk factors, family history and stuff like that. When you are done with that part then they ask you to go in and but in height and weight and then optionally you can put in doctors that have been in on the treatment and then upload scans and labs and what not. So those can be done at a later time which is my plan.
KrisVJune 28, 2014 at 2:17 am #83354middlesister1Moderator
Kris, just wondering, I have access to labs, but do not have notes or scans. Should we start to register or do we need those? We don’t see onc till September so probably won’t press Mom to collect more records until then. Thank youJune 28, 2014 at 1:33 am #83353kvollandSpectator
I am with Lainy. Did it this afternoon for Mark and it only took just a few minutes. Very little of it did I have to go back and look at records (staging was the big one because I just tried not to remember). I go through it eazy, breezy. I now will go back and scan and upload labs and stuff like that but that will take time.
I am really curious to see how many people signed up in the first few hours. I was betting we blew up the website!
And Lainy, you can’t be that computer illiterate, you manage to the boards pretty well. And I know you can email….that’s pretty good.
KrisVJune 28, 2014 at 1:13 am #10233
Hi Family, please do not get discouraged or not sign up just because old computer illiterate me had a problem. I can now get in on my own. Even though I have been on computers since they first came out I don’t go further than what I need to do! The form is a breeze and like I said it really showed me how we knew nothing 8 years ago. This is to help everyone and we really need your input. We are the pioneers of cc with new horizons to be discovered. If you have already signed up thank you so much and if you have not please get on here and do your thing! We are all in this together.
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