The genetic laboratories based at Cambridge University Hospitals NHS Foundation Trust (CUH) offers genetic testing to identify the gene alteration (mutation) that is causing Von Hippel-Lindau Disease (VHL) in the majority of families. Marbella Farrer, a Genetic Counsellor based at the genetics laboratories wanted to develop a hand held patient record for patients with VHL that came to CUH for genetic testing.
VHL is a rare inherited condition. It causes a variety of medical or surgical complications, it can affect multiple people in the same family differently and at different stages throughout their lifetime. The booklet contains information for other medical professionals and health care providers that are unfamiliar with VHL and the complications associated with it.
Those with VHL need yearly screenings of their eyes, kidneys, pancreas, adrenal glands, head and spine as complications may not produce any symptoms and may only be detected on screening.
The booklet provides the patient with a reference to the potential problems associated with VHL, what each screening is looking for and any further care that might be needed.
When it came to corporate identity of this booklet we needed to identify that it was a part of CUH but the booklet was not going to be used exclusively at the hospital, as patients would only come to the genetics laboratories for initial VHL testing so we did not need to follow CUH brand guidelines. We collaborated with the Trust's patient information department – the booklet was to be read by all ages, race and gender.
This was a low print run that was run digitally. The booklet was a 40 printed-paged A5 booklet with a pocket at the back for extra notes.
