Child LIMPRINT

Background

Child LIMPRINT is a unique, scientifically rigorous, and very ambitious project which will be developed by the ILF during 2020-2023. The methodology of the LIMPRINT research project will be used, but Child LIMPRINT will only include children and young people living with lymphoedema.

No international prevalence study specifically targeting children with lymphoedema has ever been made, and the only quoted earlier research is from the 1980s.

Project Description
The overall aim of Child LIMPRINT is to establish the national prevalence of children and young people/adults below 30 years with lymphoedema in Denmark. Child LIMPRINT will focus primarily on children with lymphoedema, and secondarily on their families.

The project will be developed in collaboration between A) the Bispebjerg Hospital, Copenhagen, Denmark, B) the St Georges University Hospital centre, London, UK, C) the Nottingham Trent University, UK and D) the Montpellier University Hospital, France.

The national prevalence aims at including all Danish children living with lymphoedema as well as those at risk (e.g. cancer and spina bifida patients) or not yet diagnosed but with swelling.

Denmark has been chosen for the study because the general Danish health registry makes it possible to identify already diagnosed persons for the study. Further details are described in the protocol and ethical approval has been granted.

The project will include the following activities:

• Prevalence study (mixed methods)
• Development and validation of methods
• Elaboration of clinical profiles including assessment of co-morbidities and complications
• Elaboration of genetic profiles
• Impact assessment including Quality of Life, Function, Parental impact, and Family impact.