GIST Patient Registry
Read a more in-depth
description of the
Patient Registry

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.

Demographics

Marital Status

PR 2016 Graph Marital Status

Sex

Equally divided between men and women

Distribution of Age at Diagnosis

PR 2016 Distribution of Age at Diagnosis

GIST is mainly diagnosed in people above the age of 50, however people of all ages are affected.

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.

Patient Registry 2016 - Number of GIST Patients in the Registry by State

The patient registry reaches 67 different countries

Top 5 Countries Outside the US

Top 5 Countries Outside the US

Median Overall Survival

12 Years Median Survival Years of all Registry Patients

12 Years Median Survival Years of all Registry Patients

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.

Graph Risk of Recurrence

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

Tumor Staging and Risk Stratification

Most patients in the Patient Registry are high risk despite being diagnosed with a single tumor. Learn How to Read Your Pathology Report to understand tumor staging and risk.

Graph Risk Stratification

Treatment

Current Treatment of Living Patients

Current treatment of living patients

*Other includes but is not limited to: sorafenib, pazopanib, and nivolumab

Average Time on Medication

Drug Treatment

Drug Average TOM (months)
imatinib (Gleevec) 40.11
sunitinib (Sutent) 14.8
regorafenib (Stivarga) 11.66
Off-label* 7.72

*Off-label refers to a group of 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.

Treatment Interruptions

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.


Patient Registry 2016 treatment interruptions

* The remaining 18% refers to the off label drugs.

Tissue Bank

Tissue Bank

of LRG Registry Members know their mutation43%

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

Trend of Mutation Tests Over the Years

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.

Breakdown of GIST Mutation by Age

Out of those 43% who know their mutation, this represents the breakdown by gene.

Graph Mutation Type

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Join the Patient Registry

Core Values