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LRG GIST Patient Registry

8 de julho de 2026 atualizado por: 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.

Visão geral do estudo

Status

Recrutamento

Condições

Descrição detalhada

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.

Tipo de estudo

Observacional

Inscrição (Estimado)

5000

Contactos e Locais

Esta seção fornece os detalhes de contato para aqueles que conduzem o estudo e informações sobre onde este estudo está sendo realizado.

Contato de estudo

Nome: Patient Registry Department
Número de telefone: 973-837-9092
E-mail: patientregistrydepartment@liferaftgroup.org

Locais de estudo

Estados Unidos
- New Jersey
  - Wayne, New Jersey, Estados Unidos, 07470
    - Recrutamento
    - The Life Raft Group
    - Contato:
      
      Número de telefone: 973-837-9092
      
      E-mail: patientregistrydepartment@liferaftgroup.org

Critérios de participação

Os pesquisadores procuram pessoas que se encaixem em uma determinada descrição, chamada de critérios de elegibilidade. Alguns exemplos desses critérios são a condição geral de saúde de uma pessoa ou tratamentos anteriores.

Critérios de elegibilidade

Idades elegíveis para estudo

Filho
Adulto
Adulto mais velho

Aceita Voluntários Saudáveis

Não

Método de amostragem

Amostra Não Probabilística

População do estudo

Gastrointestinal Stromal Tumor diagnosis

Descrição

Inclusion Criteria:

Gastrointestinal Stromal Tumor diagnosis
Provide written and informed consent

Exclusion Criteria:

Plano de estudo

Esta seção fornece detalhes do plano de estudo, incluindo como o estudo é projetado e o que o estudo está medindo.

Como o estudo é projetado?

Detalhes do projeto

O que o estudo está medindo?

Medidas de resultados primários

Medida de resultado	Descrição da medida	Prazo
Overall survival Prazo: 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 Prazo: 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 Prazo: 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 Prazo: 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 Prazo: 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.

Colaboradores e Investigadores

É aqui que você encontrará pessoas e organizações envolvidas com este estudo.

Patrocinador

The Life Raft Group

Datas de registro do estudo

Essas datas acompanham o progresso do registro do estudo e os envios de resumo dos resultados para ClinicalTrials.gov. Os registros do estudo e os resultados relatados são revisados pela National Library of Medicine (NLM) para garantir que atendam aos padrões específicos de controle de qualidade antes de serem publicados no site público.

Datas Principais do Estudo

Início do estudo (Real)

1 de abril de 2013

Conclusão Primária (Estimado)

31 de dezembro de 2099

Conclusão do estudo (Estimado)

31 de dezembro de 2099

Datas de inscrição no estudo

Enviado pela primeira vez

1 de julho de 2026

Enviado pela primeira vez que atendeu aos critérios de CQ

8 de julho de 2026

Primeira postagem (Real)

13 de julho de 2026

Atualizações de registro de estudo

Última Atualização Postada (Real)