April 2012

LRG uses registry & “GISTory” to help patients in a new way

By Magda Sarnas & Roberto Pazmino

Many of you who participate in the Life Raft Group’s Patient Registry may have received our monthly plea to help us update our records. Those who received this plea in November also received an additional surprise: We included a PDF document that consolidated your medical history of GIST, aka your GISTory. We did this for a few reasons. We wanted to verify the information you have provided to us over the years, as well as provide you with a summary that will help you better track your diagnosis, treatment and scans.

For those of you have not seen the form, we made an easy-to-follow diagram (below).

What are the benefits of a GISTory?

Our new electronic medical record system gives you more flexibility and more direct access to your health information than ever before.

• View your health summary, current health conditions and health history
• View evaluation results
• View current and previous medications
• Identify patterns that may be relevant to your own health
• GISTory can help your doctor interpret the history of disease
• Greatly help you in understanding and gaining control of your health
• Help present and future practitioners treat you much more effectively

How do we use this information?

We utilize the data from this registry to identify critical areas not being covered in a timely way by clinical trials or by the traditional cancer research community, including understanding the non-toxic but life-altering side-effects of cancer drugs and the implications of changes in drug levels after a clinical trial has started.

How do I keep it accurate and up-to-date?

We can provide your Gistory by email, mail, or fax. All you have to do is provide us your current contact information so we can assure that you will get your personal copy. Once you receive it, please review the entire contents of the document. From your initial diagnosis to your latest scan, we would like make sure we have your GISTory correctly recorded. Remember that this tool is useful only if you keep it up to date by providing us medical updates.

To provide us with corrected and/or new information about your medical history, contact us at: email at This e-mail address is being protected from spambots. You need JavaScript enabled to view it , fax at 973-837- 9095, call at 973-835-9092, or go online.

How do I get a copy?

If you joined our Patient Registry and keep current contact information, you should be receiving it by email every month when your next update is due.

If you would like to get more information or join our patient registry, please call us at 973-837-9092 or join online.

We hope to provide better support and accessibility to help manage your medical records for GIST. We are currently working on online access on demand to your own medical record.