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LRG GIST Patient Registry

8 juillet 2026 mis à jour par: 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.

Aperçu de l'étude

Statut

Recrutement

Les conditions

Description détaillée

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.

Type d'étude

Observationnel

Inscription (Estimé)

5000

Contacts et emplacements

Cette section fournit les coordonnées de ceux qui mènent l'étude et des informations sur le lieu où cette étude est menée.

Coordonnées de l'étude

Nom: Patient Registry Department
Numéro de téléphone: 973-837-9092
E-mail: patientregistrydepartment@liferaftgroup.org

Lieux d'étude

États-Unis
- New Jersey
  - Wayne, New Jersey, États-Unis, 07470
    - Recrutement
    - The Life Raft Group
    - Contact:
      
      Numéro de téléphone: 973-837-9092
      
      E-mail: patientregistrydepartment@liferaftgroup.org

Critères de participation

Les chercheurs recherchent des personnes qui correspondent à une certaine description, appelée critères d'éligibilité. Certains exemples de ces critères sont l'état de santé général d'une personne ou des traitements antérieurs.

Critère d'éligibilité

Âges éligibles pour étudier

Enfant
Adulte
Adulte plus âgé

Accepte les volontaires sains

Non

Méthode d'échantillonnage

Échantillon non probabiliste

Population étudiée

Gastrointestinal Stromal Tumor diagnosis

La description

Inclusion Criteria:

Gastrointestinal Stromal Tumor diagnosis
Provide written and informed consent

Exclusion Criteria:

Plan d'étude

Cette section fournit des détails sur le plan d'étude, y compris la façon dont l'étude est conçue et ce que l'étude mesure.

Comment l'étude est-elle conçue ?

Détails de conception

Que mesure l'étude ?

Principaux critères de jugement

Mesure des résultats	Description de la mesure	Délai
Overall survival Délai: 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 Délai: 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 Délai: 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 Délai: 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 Délai: 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.

Collaborateurs et enquêteurs

C'est ici que vous trouverez les personnes et les organisations impliquées dans cette étude.

Parrainer

The Life Raft Group

Dates d'enregistrement des études

Ces dates suivent la progression des dossiers d'étude et des soumissions de résultats sommaires à ClinicalTrials.gov. Les dossiers d'étude et les résultats rapportés sont examinés par la Bibliothèque nationale de médecine (NLM) pour s'assurer qu'ils répondent à des normes de contrôle de qualité spécifiques avant d'être publiés sur le site Web public.

Dates principales de l'étude

Début de l'étude (Réel)

1 avril 2013

Achèvement primaire (Estimé)

31 décembre 2099

Achèvement de l'étude (Estimé)

31 décembre 2099

Dates d'inscription aux études

Première soumission

1 juillet 2026

Première soumission répondant aux critères de contrôle qualité

8 juillet 2026

Première publication (Réel)

13 juillet 2026

Mises à jour des dossiers d'étude

Dernière mise à jour publiée (Réel)