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LRG GIST Patient Registry

8. juli 2026 oppdatert av: 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.

Studieoversikt

Status

Rekruttering

Forhold

Detaljert 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.

Studietype

Observasjonsmessig

Registrering (Antatt)

5000

Kontakter og plasseringer

Denne delen inneholder kontaktinformasjon for de som utfører studien, og informasjon om hvor denne studien blir utført.

Studiekontakt

Navn: Patient Registry Department
Telefonnummer: 973-837-9092
E-post: patientregistrydepartment@liferaftgroup.org

Studiesteder

Forente stater
- New Jersey
  - Wayne, New Jersey, Forente stater, 07470
    - Rekruttering
    - The Life Raft Group
    - Ta kontakt med:
      
      Telefonnummer: 973-837-9092
      
      E-post: patientregistrydepartment@liferaftgroup.org

Deltakelseskriterier

Forskere ser etter personer som passer til en bestemt beskrivelse, kalt kvalifikasjonskriterier. Noen eksempler på disse kriteriene er en persons generelle helsetilstand eller tidligere behandlinger.

Kvalifikasjonskriterier

Alder som er kvalifisert for studier

Barn
Voksen
Eldre voksen

Tar imot friske frivillige

Nei

Prøvetakingsmetode

Ikke-sannsynlighetsprøve

Studiepopulasjon

Gastrointestinal Stromal Tumor diagnosis

Beskrivelse

Inclusion Criteria:

Gastrointestinal Stromal Tumor diagnosis
Provide written and informed consent

Exclusion Criteria:

Studieplan

Denne delen gir detaljer om studieplanen, inkludert hvordan studien er utformet og hva studien måler.

Hvordan er studiet utformet?

Designdetaljer

Hva måler studien?

Primære resultatmål

Resultatmål	Tiltaksbeskrivelse	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.

Samarbeidspartnere og etterforskere

Det er her du vil finne personer og organisasjoner som er involvert i denne studien.

Sponsor

The Life Raft Group

Studierekorddatoer

Disse datoene sporer fremdriften for innsending av studieposter og sammendragsresultater til ClinicalTrials.gov. Studieposter og rapporterte resultater gjennomgås av National Library of Medicine (NLM) for å sikre at de oppfyller spesifikke kvalitetskontrollstandarder før de legges ut på det offentlige nettstedet.

Studer hoveddatoer

Studiestart (Faktiske)

1. april 2013

Primær fullføring (Antatt)

31. desember 2099

Studiet fullført (Antatt)

31. desember 2099

Datoer for studieregistrering

Først innsendt

1. juli 2026

Først innsendt som oppfylte QC-kriteriene

8. juli 2026

Først lagt ut (Faktiske)

13. juli 2026

Oppdateringer av studieposter

Sist oppdatering lagt ut (Faktiske)