LRG GIST Patient Registry
2026年7月8日 更新者：The Life Raft Group
Life Raft Group GIST Registry Protocol
The Life Raft Group (LRG) Patient Registry is a structured database that collects comprehensive information about individuals diagnosed with GIST.
The purpose of this registry is to facilitate research, improve understanding of the disease, track patient outcomes, and ultimately enhance patient care.
研究概览
地位
招聘中
详细说明
An organization called the Life Raft Group (LRG) wants to find out more about a cancer called Gastrointestinal Stromal Tumors (GIST) as well as other cancers that may or may not be related to GIST.
To collect this information, LRG has created a research registry.
A registry is a place where medical information, family history and other related information from patients is collected and stored for medical research.
The purpose of the Life Raft Group GIST registry is to collect and store medical information and other information from individuals with the same disease or other cancers that share commonalities such as molecular targets, treatments, or other factors.
Information from patients in this registry will be used for medical research to better understand GIST and these other diseases.
Scientists studying GIST and these other diseases need more accurate, real-world information to understand how these diseases affect people.
People with GIST and other related or unrelated diseases are being asked if they would like to participate in the Life Raft Group registry.
The Life Raft Group GIST registry is also linked to a tissue bank, which is a place that stores tumor tissue, blood or other samples from patients.
Participants may also be asked to provide samples to the tissue bank.
Participants would need to read and sign a separate consent form about the tissue bank.
Participants do not have to take part in any other Life Raft Group activities, including the tissue bank and online forums, to take part in this registry.
研究类型
观察性的
注册 (估计的)
5000
联系人和位置
本节提供了进行研究的人员的详细联系信息，以及有关进行该研究的地点的信息。
学习联系方式
- 姓名：Patient Registry Department
- 电话号码：973-837-9092
- 邮箱：patientregistrydepartment@liferaftgroup.org
学习地点
-
-
New Jersey
-
Wayne、New Jersey、美国、07470
- 招聘中
- The Life Raft Group
-
接触：
- 电话号码：973-837-9092
- 邮箱：patientregistrydepartment@liferaftgroup.org
-
-
参与标准
研究人员寻找符合特定描述的人，称为资格标准。这些标准的一些例子是一个人的一般健康状况或先前的治疗。
资格标准
适合学习的年龄
- 孩子
- 成人
- 年长者
接受健康志愿者
不
取样方法
非概率样本
研究人群
Gastrointestinal Stromal Tumor diagnosis
描述
Inclusion Criteria:
- Gastrointestinal Stromal Tumor diagnosis
- Provide written and informed consent
Exclusion Criteria:
-
学习计划
本节提供研究计划的详细信息，包括研究的设计方式和研究的衡量标准。
研究是如何设计的？
设计细节
研究衡量的是什么？
主要结果指标
结果测量 |
措施说明 |
大体时间 |
|---|---|---|
|
Overall survival
大体时间：From the date of registry enrollment until death from any cause, assessed through follow-up for up to 25 years.
|
Time from registry enrollment until death from any cause.
|
From the date of registry enrollment until death from any cause, assessed through follow-up for up to 25 years.
|
|
Progression Free Survival
大体时间：From the date of registry enrollment until the first documented disease progression or death from any cause, whichever occurs first, assessed through follow-up for up to 25 years.
|
Time from registry enrollment until documented disease progression or death, whichever occurs first.
|
From the date of registry enrollment until the first documented disease progression or death from any cause, whichever occurs first, assessed through follow-up for up to 25 years.
|
|
Recurrence Free Survival
大体时间：From the date of complete surgical resection until the first documented recurrence of GIST or death from any cause, whichever occurs first, assessed through follow-up for up to 25 years.
|
Time from registry enrollment (or from complete surgical resection, if that is the clinically relevant starting point) until the first documented recurrence of GIST or death from any cause, whichever occurs first.
|
From the date of complete surgical resection until the first documented recurrence of GIST or death from any cause, whichever occurs first, assessed through follow-up for up to 25 years.
|
|
Disease Free Survival
大体时间：From the date of complete surgical resection until the first documented recurrence of GIST or death from any cause, whichever occurs first, assessed through follow-up for up to 25 years.
|
Disease-free survival is defined as the time from complete surgical resection of localized GIST until the first documented recurrence of GIST or death from any cause, whichever occurs first.
|
From the date of complete surgical resection until the first documented recurrence of GIST or death from any cause, whichever occurs first, assessed through follow-up for up to 25 years.
|
|
Time of Medication
大体时间：From the date of treatment initiation until permanent discontinuation of the medication for any reason, assessed through follow-up for up to 25 years.
|
Duration of treatment with a specific systemic therapy (e.g., imatinib, sunitinib, regorafenib, ripretinib), measured from treatment initiation until permanent discontinuation for any reason, including disease progression, toxicity, patient preference, or death.
|
From the date of treatment initiation until permanent discontinuation of the medication for any reason, assessed through follow-up for up to 25 years.
|
合作者和调查者
在这里您可以找到参与这项研究的人员和组织。
研究记录日期
这些日期跟踪向 ClinicalTrials.gov 提交研究记录和摘要结果的进度。研究记录和报告的结果由国家医学图书馆 (NLM) 审查，以确保它们在发布到公共网站之前符合特定的质量控制标准。
研究主要日期
学习开始 (实际的)
2013年4月1日
初级完成 (估计的)
2099年12月31日
研究完成 (估计的)
2099年12月31日
研究注册日期
首次提交
2026年7月1日
首先提交符合 QC 标准的
2026年7月8日
首次发布 (实际的)
2026年7月13日
研究记录更新
最后更新发布 (实际的)
2026年7月13日
上次提交的符合 QC 标准的更新
2026年7月8日
最后验证
2026年7月1日
更多信息
此信息直接从 clinicaltrials.gov 网站检索，没有任何更改。如果您有任何更改、删除或更新研究详细信息的请求，请联系 register@clinicaltrials.gov. clinicaltrials.gov 上实施更改，我们的网站上也会自动更新.