Treatment Approach in the Multimodal era (TEAM) Registry
Research type
Research Database
IRAS ID
334249
Contact name
Joanna Pepke-Zaba
Contact email
Research summary
Treatment Approach in the multimodal era (TEAM) Registry
REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
23/YH/0243
Date of REC Opinion
20 Nov 2023
REC opinion
Further Information Favourable Opinion
Data collection arrangements
The TEAM registry will collect the following information on approximately 1000 adult patients with CTEPH or CTEPD without PH from approximately 30 sites worldwide:
• Year of birth, ethnicity, gender, height and weight of patients
• When patients were diagnosed with CTEPH/CTEPD without PH and how they were feeling then
• The results of any tests to confirm CTEPH/CTEPD without PH
• What treatment doctors are planning for the patient
• If patients undergo surgery, information on the surgery
• If patients undergo treatment with a balloon, information on balloon treatment
• If patients receive treatment with drugs, information on drug treatment
• How patients are feeling during/after treatment and whether treatment helps them feel better
• Information on unplanned admissions to the hospital if there are any
• Whether doctors measure patients’ quality of life, and if so, how they do this
Participating researchers will enter these data directly into the study database.Research programme
There are currently three treatment options for patients with CTEPH and CTEPD without PH: surgery, treatment with a balloon (balloon pulmonary angioplasty) and treatment with drugs. Doctors can also combine these treatment options; however, not all patients can receive all forms of treatment. The researchers of the TEAM registry will work with expert centres worldwide that have experience with all three treatment options for CTEPH and CTEPD without PH. The researchers want to find out how these centres treat patients that are newly referred. They have designed the registry in a way that allows them to see how doctors combine treatments and how effective the different treatment combinations are. The registry will also collect data on the subgroup of patients with CTEPD without PH. All patients will receive the same treatment and see their doctor as often as if they did not participate in the registry. The researchers hope that this research will help them better understand the different treatment options for CTEPH and CTEPD without PH so that patients can receive better care.
Research database title
Treatment Approach in the multimodal era (TEAM) Registry
Establishment organisation
International CTEPH Association (ICA)
Establishment organisation address
c/o artax Fide Consult AG
Gartenstrasse 95
Basel
4002