Rare Diseases

All Conditions

Crouzon Syndrome

Jackson-Weiss Syndrome

Pfeiffer Syndrome

* Data collection from the medical file
* Quality of life questionnaire (QLQC30) at inclusion, at each change of treatment and then every 6 months

Data collection and quality of life questionnaire

Julien Bollard

Alexandra BIETTE

Andreas LEITNER

Thomas BRODOWICZ

Jana Halámková

Ninna Aggerholm

Loic CHAIGNEAU

Antoine ITALIANO

Alice HERVIEU

Nicolas PENEL

Valérie LE BRUN LY

Alexandra Biette

Jean-Yves BLAY, Pr

Marie Eve GARCIA

Esma SAADA-BOUZID

Sarah WATSON

Jean-Philippe SPANO

Pascaline BOUDOU-ROUQUETTE

Jean-Pierre LOTZ

Cécile GUILLEMET

Thibaud VALENTIN

Manfred WELSLAU

Jalid SEHOULI

Mathias HANEL

Jorg TROJAN

Haifa Kathrin Al-Ali

Marino Venerito

Bernd KASPER

Volker HEINEMANN

Hans-Heinrich WOLF

Constantin Roder

Volker KUNZMANN

Maria Abbondenza PANTALEO

Toni IBRAHIM

Marica EOLI

Alice BERGAMINI

Mario GIULIANO

Riccardo SOFFIETTI

Ellen KAPITEIJN

Iwona LUGOWSKA

Mojca UNK

Javier MARTIN-BROTO

Robin JONES

John BRIDGEWATER

This registry will make it possible to describe real life management of patients with rare actionable fusions and to better understand these cancers. In addition of clinical data from the medical files, a quality of life questionnaire (QLQ-C30) will be complete at inclusion, at each new treatment and then every 6 months. The patients will be followed for a period of at least 2 years after the inclusion.

This TRacKING registry is a European collaborative tool to improve the management of patients with actionable fusions, by sharing of data from rare tumor indications.

1. Administrative opening of the center
2. Routine identification of a patients harboring a rare actionable fusion
3. Patient's inclusion

   * Signature of written informed consent,
   * Declaration by the physician to the coordinating center (using the "Physician declaration" form)
   * Completion of the QLQ-C30 questionnaire (at inclusion, at each new treatment and then every 6 months).
4. Collection of retrospective and prospective data into the e-CRF by a local CRA using patients' medical files.

Real Word European Registry of NTRK Fusions and Other Rare Actionable Fusions (TRacKING)

To describe the survival rate of patients with solid cancers harboring a NTRK fusion or other rare actionable fusion in real-life practice, according to overall survival (OS)

Treatment scheme : number of line and type of treatments

To evaluate patient-reported outcomes concerning individual QoL according to QLQ-C30 (EORTC Quality of Life questionnaires)

using QLQC30 (EORTC Quality of Life questionnaires)

Using Common Terminology Criteria for Adverse Events (CTCAE) V5.0.

Centre Leon Berard

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization	Link
Real Word European Registry of NTRK Fusions and Other Rare Actionable Fusions (TRacKING)	NCT04921553	Cancer Cancer Metastat... NTRK Gene Fusio... NTRK Family Gen... ATIC-ALK Fusion... ALK Fusion Prot... BCR-FGFR1 Fusio... ROS1 Gene Trans... COL1A1-PDGFB Fu... RET Gene Transl... Gene Fusion ROS Gene Transl... BRAF Gene Rearr... FGFR2 Gene Tran... FGFR3 Gene Tran... NTRK1 Gene Tran...	Data collection...	18 Years -	Centre Leon Berard
Real Word European Registry of NTRK Fusions and Other Rare Actionable Fusions (TRacKING)	NCT04921553	Cancer Cancer Metastat... NTRK Gene Fusio... NTRK Family Gen... ATIC-ALK Fusion... ALK Fusion Prot... BCR-FGFR1 Fusio... ROS1 Gene Trans... COL1A1-PDGFB Fu... RET Gene Transl... Gene Fusion ROS Gene Transl... BRAF Gene Rearr... FGFR2 Gene Tran... FGFR3 Gene Tran... NTRK1 Gene Tran...	Data collection...	18 Years -	Centre Leon Berard

Spots Global Cancer Trial Database for data collection and quality of life questionnaire