Registry-based studies
RELEASE-HF, TITRATE-HF & ENGAGE-HF are registry-based studies that make use of the basis data registration of the HF and AF registration, or will use the data registry in the upcoming years for feedback to sites (chart modules), data linkage or follow-up variables.
Hospitals therefore take advantage of both the benefits of quality registration and these research projects. Aligning registration of the variables to be collected in these registration studies can work synergistically and reduce workload. These projects are supported and recommended by all the aforementioned DCVA partners.
TITRATE-HF
TITRATE-HF is the heart failure registry study with direct clinical questions from the heart failure practice. Because TITRATE-HF links up with regular care, there are no of separate study visits and additional patient or care burden.
TITRATE-HF is:
- A national heart failure registry (4000 patients) recording how heart failure patients are titrated according to the guideline.
- Has been approved by the METC as a study not subject to WMO requirements.
- The study has started successfully and the first patients are participating.
- Brief informed consent is sought from heart failure patients.
- For all hospitals in the Netherlands.’
- The TITRATE-HF dataset also includes the variable set from the NHR quality registration heart failure. By means of data linking, duplicate registration is avoided and synergy is created. When participating in TITRATE-HF, you can also participate in the NHR heart failure quality registration and subprojects. TITRATE-HF includes, for the centres themselves and the scientific output and mirror information will be shared with you will be shared.
What’s the advantage for hospitals?
A real-world overview of the patient population, treatment and outcomes by inclusion of stable chronic HF patients, as well as de novo HF patients and worsening HF patients. The mirror information returned will answer, among others ESC 2021 heart failure guideline treatment questions in practice such as:
The mirror information you get back answers the questions:
- What is the optimal method of optitration (order, rate and dosage of the four pillars guideline medication and effect on prognosis). Also, the hypothesis “better of everything a little bit than of one drug the target dose” we can prospectively better substantiate.
- If the target dose is not achieved, what is the reason (intolerance)? This provides insight on appropriate doses in women, elderly or co-morbidities.
For study-related efforts, there is a financial allowance. There are no additional or care-related specific study visit.
TITRATE-HF is supported by the following consortium partners: Netherlands Heart Institute (NLHI), Nederlandse Vereniging voor Cardiologie (NVVC), Werkgroep Cardiologische Centra Nederland (WCN), Nederlandse Hart Registratie (NHR), Dutch CardioVascular Alliance (DCVA).
ENGAGE-HF
ENGAGE-HF is an approachable and interactive project in which we will provide you with tools and motivation to encourage NHR quality registration heart failure in your centre boost. Using the ENGAGE-HF gamification toolkit, you will be challenged to expand the NHR heart failure quality registration and in an educational way to apply the 2021 ESC heart failure guideline.
ENGAGE-HF is:
- intended to assist you in the NHR heart failure quality registration by supporting starting the registration process in your hospital, or increasing the entry of heart failure patients in your hospital;
- Has been approved by the METC as a study not subject to the WMO;
- Voluntary, only for centres participating in the NHR quality registration heart failure
What does participation in ENGAGE-HF offer?
Participation will increase involvement in the NHR heart failure quality registry including contacts. The NHR heart failure quality registration offers mirror information for the healthcare provider of one’s own centre compared to other centres in Netherlands. Through educational game elements, tools are offered for (further) structuring the registration process in your centre and drawing attention to the 2021 ESC guidelines heart failure. At the start of participation in ENGAGE-HF an initiation fee is available. In addition, there is a reward to be earn for the heart failure nurses.
After registering, you can download the ENGAGE-HF toolkit for free from the app store or play store. After commissioning, you will be asked to sign a user agreement which includes agreements on data use and your privacy. We will then motivate and guide you for five weeks on the NHR heart failure quality registration. After that, it is up to you as a hospital to continue registering. In week 8 and week 24, we will come back with a number of refresh challenges.
Register your hospital now via: ENGAGE-HF@erasmusmc.nl.
For any questions, please also contact ENGAGE-HF@erasmusmc.nl
ENGAGE-HF was created in collaboration with Werkgroep Cardiologische Centra Nederland (WCN), Dutch Heart Registration (NHR), Dutch CardioVascular Alliance (DCVA).
RELEASE-HF
RELEASE-HF is an observational and registry-based study of the clinical and (cost) effectiveness of telemonitoring in heart failure patients. RELEASE-HF aims to provide insight into the questions: in which heart failure patient is telemonitoring (cost-)effective and which components of telemonitoring contribute to this. In addition, the components and vision of on telemonitoring in the Netherlands by means of interviews with hospitals that offer telemonitoring and hospitals that do not (yet) offer telemonitoring.
- Observes patients in hospitals with and without telemonitoring;
- Identifies the (cost) effectiveness of HF telemonitoring;
- Is a study requiring data entry at the NHR and an interview;
- Has been approved by the METC as a study not subject to the WMO;
- Only for centres participating in the NHR heart failure quality registry.
To determine the effectiveness of telemonitoring, variables will be in heart failure patients collected from the Dutch Heart Registration (NHR), in accordance with the NHR manual. Each patient is followed up in RELEASE-HF for 1 year followed up including the three measurements according to NHR manual: inclusion, 6 months and 12 months.
What does participation in RELEASE-HF offer?
Participation in RELEASE-HF also means participation in the NHR quality registry heart failure. RELEASE-HF gives you insight and guidance on the implementation, use and heterogeneity of telehealth, considering clinical and cost effects. RELEASE-HF provides a financial compensation for each complete delivery of data per patient. RELEASE-HF comprises a consortium with over 30 hospitals in the Netherlands, patient and professional associations (Harteraad, Hartstichting, NHR, DCVA, NVVC, NVHVV, WCN, HartVaatHAG) and health insurers. RELEASE-HF gives you insight, the use and heterogeneity of telemonitoring.
Would you like to register to participate or do you have any questions? If so, please contact: Jorna van Eijk j.vaneijk-4@umcutrecht.nl
Funding
The DCVA consortium Heart4Data has been made possible thanks to a grant from ZonMW and the Dutch Heart Foundation.
