To create a registry that can be used for future research on optimising diagnostic protocols, treatment strategies, improving symptom-free survival and optimising patient follow-up among all three forms of TOS and iUEDVT
ID
Bron
Verkorte titel
Aandoening
Thoracic Outlet Syndrome and idiopatic upper extremity deep venous thrombosis.
Ondersteuning
Onderzoeksproduct en/of interventie
Uitkomstmaten
Primaire uitkomstmaten
Not applicable
Achtergrond van het onderzoek
The optimal treatment strategy for arterial (ATOS), venous (VTOS), and neurogenic (NTOS) Thoracic Outlet Syndrome (TOS) is still under debate. Given the rare nature of TOS quality data concerning diagnostics, treatment, and prognosis are lacking. This is an ongoing registry that supports collective prospective patient data gathering, which is a proven method to perform research on medical disorders presenting with a very low incidence. This registry is an online registry for extensive data collection on all patients with TOS. Each included patient will receive periodic questionnaires regarding the affected arm and quality of life (Quick-Dash, EQ5D-5L). In addition to TOS patients, patients with idiopathic upper extremity deep venous thrombosis without an apparent cause (e.g. compression as seen in venous TOS) will also be included to compare this patient group with venous TOS patients with thrombosis. We intend to expand this registry internationally, linking experts globally on this subject.
Doel van het onderzoek
To create a registry that can be used for future research on optimising diagnostic protocols, treatment strategies, improving symptom-free survival and optimising patient follow-up among all three forms of TOS and iUEDVT
Onderzoeksopzet
Not applicable
Onderzoeksproduct en/of interventie
Not applicable
Publiek
Wetenschappelijk
Belangrijkste voorwaarden om deel te mogen nemen (Inclusiecriteria)
Patients with Thoracic Outlet Syndrome (arterial, venous and neurogenic) and idiopatic upper extremity deep venous thrombosis.
Belangrijkste redenen om niet deel te kunnen nemen (Exclusiecriteria)
Patients with secondary upper extremity deep venous thrombosis due to an indwelling device (e.g. pacemaker leads, intravenous catheter)
Opzet
Deelname
Voornemen beschikbaar stellen Individuele Patiënten Data (IPD)
Opgevolgd door onderstaande (mogelijk meer actuele) registratie
Geen registraties gevonden.
Andere (mogelijk minder actuele) registraties in dit register
Geen registraties gevonden.
In overige registers
| Register | ID |
|---|---|
| NTR-new | NL9680 |
| Ander register | METC Utrecht : METC 21-326 |