Anyone here have experience with the IBC registry?

AlaskaAngel

Hello

I am not sure if the IBC registry is run by MD Anderson, or Fox Chase and Cristofanelli. Does anyone have a link for finding out more about it, or know whether a patient can be part of the registry even if they aren't being treated at either MD Anderson or Fox Chase?

Thanks

AlaskaAngel

(sister to IBC patient)

leisaparis

I don't know the answer to that. But, there is a gal named Terry that has made a map of all the IBC patients she has contacted. If you wish to be a part of that you can e-mail her. If you want her e-mail address pm me. She is also on facebook if you are a part of that.   Leisa

leisaparis

You can also look under this forum in IBC map ( from lorieg ). She is the one I contacted to get to Terry.

AlaskaAngel

Hi Liesa,

Thanks for the reply. It is my sister who has IBC, and I am encouraging her to consider such things as the research registry for developing better information about treatment,

I also am letting her know that she could consider being part of the separate effort to create the map, to help with the isolation those who have IBC are faced with, and so that they are able to share direct experience and suggestions with others who have IBC.

AlaskaAngel

AlaskaAngel

I'm still working on finding out more about the registry... stumbling my way around... make that registr(ies)....

There have been at least 2 of them in the US....:

http://www.ibchelp.org/registry.html 

.....but then there is also the international one that is more recent, and I don't know if the first 2 above are now part of that one, or not... look for the second story down the screen, titled

"Thirty Countries Form Inflammatory Breast Cancer World Alliance", by By Pam Jones on December 11, 2009 3:42 PM

http://www2.mdanderson.org/MT/mt-search.cgi?IncludeBlogs=6&tag=Inflammatory%20Breast%20Cancer&limit=20 

ateepay

Call Fox Chase and ask for the IBC clinic.  They have all the information on the registry.

Dr. Cristofanilli's group, working together with MD Anderson have the largest population of IBC patients at this time, I believe.

Fox Chase IBC clinic:  http://www.fccc.edu/physicians/locations/wcc/ibc.html

MD Anderson IBC clinic: http://www.mdanderson.org/education-and-research/departments-programs-and-labs/programs-centers-institutes/inflammatory-breast-cancer-research-program/index.html