New-Born Infants

New-Born Research Studies

Having a new diagnosis of CF during this time can be very challenging, however, thankfully the disease is changing rapidly because of research and new advances. Due to Research and care improvements, the outlook is improving all the time and for many families a CF diagnosis is no longer what it used to be.

We are passionate about research in the CF community – it has brought us a long way. We try to incorporate research projects into every day care as much as possible so that we can make progress, but with as little impact as possible on the lives of children and parents. We do this by collecting information and samples when children are in the hospital anyway, or collecting them from children’s homes where we can.

ENHANCE and BUNNY are two important studies that are recruiting babies with CF from diagnosis. For some long term studies like these, collecting information from the time of diagnosis is vital as it allows us to understand the earliest origins of disease and work out how the disease itself and the treatments work.

This section gives a very brief overview of what is involved in the first information sheet just gives a brief introduction to the studies. There is no need to do anything for now – we will reach out to you anyway in the next week or so to see if you are interested in joining us in these studies.

ENHANCE

This study collects information and some tests from children once per year, around the time of their annual assessment. The first phase will go on for 5 years, but in future we expect this to be a long term study, and will include >500 children. At diagnosis the things that are needed for the study are:

  • Collecting information from the child’s chart – including their diagnostic results
  • A sample of poo (this is being collected anyway)
  • A throat swab (being performed for clinical reasons but an extra swab needed for research)
  • Some blood for later analysis (will be taken only when blood tests are being done for clinical reasons)

In later years as children grow the study will collect information on lung function tests, scans and questionnaires also – only once per year.

BUNNY

This study is what we call a sub-study – children who are in ENHANCE can be part of this study also. BUNNY will run for 2 years. BUNNY will help us to understand how CF affects children’s tummies and nutrition in the first 2 years of their life. BUNNY involves the following:

  • At diagnosis all that is needed is a poo sample and a questionnaire
  • Collecting poo samples  – 8 in the first year and 5 in the second year
  • Answering questionnaires (2 minutes) about tummy symptoms when the poo samples are collected
  • Collecting information from medical notes

The study will finish at 2 years, and children will join back into ENHANCE (one visit per year).