The Lift Raft Group Patient Registry has over 15 years of self-reported and clinical data encompassing 35 years of patient history crossing institutional boundaries. The Patient Registry has 1703 patients from 67 countries with the youngest patient diagnosed at 5 and the oldest at 92 and represents 12 different mutational types.
Distribution of Age at Diagnosis
Number of GIST Patients in the Registry by State
The LRG Patient Registry has the largest patient population in California and the smallest population tied between Vermont and Wyoming. Be part of a state or country support group by contacting your Local Leader or Country Representative.
Top 5 Countries Outside the US
Median Overall Survival
Risk of Recurrence of Those Who Know Their Risk
71% of patients know their risk of recurrence. Of those who do know their risk of recurrence, the majority of them have a high risk. There are several different methods used to classify the risk of recurrence in GIST. The Patient Registry uses the Modified NIH Method, which looks at primary tumor size, mitotic count, and location.
There are some patients in the registry who do not know their risk due to lack of pathological and histological information. To learn more about how to calculate your risk visit Risk of Recurrence
*Off-label refers to a group a drugs that are taken past the 3rd line drug
Treatment Interruptions: Ending or temporarily stopping medication or altering dose.
These events are from the treatment records of all of our patients. As patients change medication or dose, multiple records are created.
Not included in the above graph are those who had a treatment interruption due to a negative event (i.e. progression or death). This is the primary cause for treatment interruption. Over the past 16 years, there have been 2166 reports of treatment interruption due to a negative event.
Treatment Interruptions Due to Side Effects*
Treatment was interrupted 848 times due to side effects. Below is a breakdown of the distribution of these interruptions by the 3 approved drugs for GIST. Side effect management is essential for the success of any treatment. Visit SideEQ for best practices and patient tips on managing side effects.
* The remaining 18% refers to the off label drugs.
Trend of Mutation Tests Over the Years
Over the years the LRG has been encouraging patients to receive mutational testing. Based off of our registry, it appears that as the years went on, a larger percentage of people received mutational testing. This means that GIST patients are more likely to receive mutational testing in 2017 than they would have in 2000
Breakdown of GIST Mutation
Out of those 43% who know their mutation, this represents the breakdown of the gene mutation by age categories at diagnosis.
Out of those 43% who know their mutation, this represents the breakdown by gene.