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LRG GIST Patient Registry

8. juli 2026 opdateret af: 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.

Studieoversigt

Status

Rekruttering

Betingelser

Detaljeret beskrivelse

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.

Undersøgelsestype

Observationel

Tilmelding (Anslået)

5000

Kontakter og lokationer

Dette afsnit indeholder kontaktoplysninger for dem, der udfører undersøgelsen, og oplysninger om, hvor denne undersøgelse udføres.

Studiekontakt

Studiesteder

Deltagelseskriterier

Forskere leder efter personer, der passer til en bestemt beskrivelse, kaldet berettigelseskriterier. Nogle eksempler på disse kriterier er en persons generelle helbredstilstand eller tidligere behandlinger.

Berettigelseskriterier

Aldre berettiget til at studere

  • Barn
  • Voksen
  • Ældre voksen

Tager imod sunde frivillige

Ingen

Prøveudtagningsmetode

Ikke-sandsynlighedsprøve

Studiebefolkning

Gastrointestinal Stromal Tumor diagnosis

Beskrivelse

Inclusion Criteria:

  1. Gastrointestinal Stromal Tumor diagnosis
  2. Provide written and informed consent

Exclusion Criteria:

-

Studieplan

Dette afsnit indeholder detaljer om studieplanen, herunder hvordan undersøgelsen er designet, og hvad undersøgelsen måler.

Hvordan er undersøgelsen tilrettelagt?

Design detaljer

Hvad måler undersøgelsen?

Primære resultatmål

Resultatmål
Foranstaltningsbeskrivelse
Tidsramme
Overall survival
Tidsramme: 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
Tidsramme: 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
Tidsramme: 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
Tidsramme: 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
Tidsramme: 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.

Samarbejdspartnere og efterforskere

Det er her, du vil finde personer og organisationer, der er involveret i denne undersøgelse.

Sponsor

The Life Raft Group

Datoer for undersøgelser

Disse datoer sporer fremskridtene for indsendelser af undersøgelsesrekord og resumeresultater til ClinicalTrials.gov. Studieregistreringer og rapporterede resultater gennemgås af National Library of Medicine (NLM) for at sikre, at de opfylder specifikke kvalitetskontrolstandarder, før de offentliggøres på den offentlige hjemmeside.

Studer store datoer

Studiestart (Faktiske)

1. april 2013

Primær færdiggørelse (Anslået)

31. december 2099

Studieafslutning (Anslået)

31. december 2099

Datoer for studieregistrering

Først indsendt

1. juli 2026

Først indsendt, der opfyldte QC-kriterier

8. juli 2026

Først opslået (Faktiske)

13. juli 2026

Opdateringer af undersøgelsesjournaler

Sidste opdatering sendt (Faktiske)

13. juli 2026

Sidste opdatering indsendt, der opfyldte kvalitetskontrolkriterier

8. juli 2026

Sidst verificeret

1. juli 2026

Mere information

Begreber relateret til denne undersøgelse

Nøgleord

Yderligere relevante MeSH-vilkår

Andre undersøgelses-id-numre

  • LRG2013PR112

Lægemiddel- og udstyrsoplysninger, undersøgelsesdokumenter

Studerer et amerikansk FDA-reguleret lægemiddelprodukt

Ingen

Studerer et amerikansk FDA-reguleret enhedsprodukt

Ingen

Disse oplysninger blev hentet direkte fra webstedet clinicaltrials.gov uden ændringer. Hvis du har nogen anmodninger om at ændre, fjerne eller opdatere dine undersøgelsesoplysninger, bedes du kontakte register@clinicaltrials.gov. Så snart en ændring er implementeret på clinicaltrials.gov, vil denne også blive opdateret automatisk på vores hjemmeside .

Kliniske forsøg med GIST

Søg i lignende forsøg

Sponsorer og samarbejdspartnere

Medicinske tilstande

Narkotikainterventioner

CROs by country

CROs in Czech Republic

Betingelser

Sjældne sygdomme

Narkotikainterventioner

Kosttilskud

Sponsor / samarbejdspartnere

Placeringer

3
Abonner