If your baby is identified as being potentially eligible to take part in a research study on pulmonary hypertension, you may be approached for consent to enrol your baby. Should this be the case the recruitment centre will provide specific information on what the study would involve. There are no specific research studies open to recruitment currently.
If you are a patient/family member who is interested in collaborating in research and contributing to the design of the pulmonary hypertension Registry please contact us at info@rephyneregistry.com.
What is a core outcome set and why is it helpful for studying babies with pulmonary hypertension?
To decide if a new treatment is safe and effective, researchers need to be able to decide whether treatment with the new medicine is better than with the current medicine. This is done by comparing ‘outcomes’ of babies treated with and without the new medicine. An outcome can be something in the short term (before discharge home from the neonatal unit) such as how long a baby needs help with their breathing, or in the long-term (after they have been discharged home) such as how many times they are re-admitted into hospital. A core outcome set is a list of outcomes that parents/guardians and professionals have decided are the most important for researchers to study in future clinical trials. The view of parents/guardians with experience of babies with pulmonary hypertension is essential to make sure we are studying the right outcomes that matter most to them.
We invited patients and families to take part in focus groups and interviews for a research study into establishing agreed core outcome sets (COS) in babies with pulmonary hypertension. For more information, please see the patient information sheet.
This project is now closed. The outcomes from this were entered into a core outcome set development project. We are in the process of analysing the data from the first round. If you have taken part you will hear from us shortly regarding the second round.
If you have any queries please email info@rephyneregistry.com.