About Us

 

If you are a parent or carer of a child with a kidney condition, we know you need high quality, reliable and supportive information.

Nurse and boyWhat is infoKID?

infoKID is an online information resource for parents and carers about kidney conditions in infants, children and young people. Our information covers a range of conditions, symptoms, causes, diagnosis, treatment and management.

As parents and carers, you can access information about your child's condition, tests and treatments as and when you need it. You can read the information on screen or download our leaflets as PDFs.

How are families involved?

Before we started developing infoKID, we spoke with families of children with kidney conditions to find out what information they needed to know. We hosted focus groups at two children's hospitals with parents, carers and young people. The feedback they provided helped inform how we developed infoKID.

Parents, carers and young people also read each topic to help make sure it is clear and answers what they want to know.

A huge thank you to the families who helped us develop infoKID!

Download a summary report of our focus groups

How is the information produced?

All information topics are written in collaboration with healthcare professionals who support children with kidney conditions - including paediatric nephrologists, nurses, social workers, play specialists, surgeons and paediatric urologists. The information goes through several stages of review to make sure it is accurate and relevant for families across the UK. All topics are reviewed by a professional medical editor.

Thank you to the many children's healthcare professionals and organisations who helped to develop the infoKID information. 

This project would not have been possible without the support of:

  • The children's kidney centres across the United Kingdom 
  • British Association of Paediatric Urologists 
  • British Association of Perinatal Medicine
  • National Kidney Federation
  • The Renal Association
  • National Registry of Rare Kidney Disease (RaDaR)
  • NHS Blood and Transplant - paediatric subgroup of the Kidney Advisory Group

Download a diagram of how we produce each information topic

Information you can trust

Information Standard quality markinfoKID carries The Information Standard kitemark to demonstrate that we provide reliable healthcare information for the public. The Information Standard is a certification scheme set up by the Department of Health, to help you identify trusted sources of health and social care information. 

To gain the Standard, we had to demonstate that our information is:

  • balanced and evidence-based - all information is reviewed over several stages by healthcare professionals working in children's kidney health; where required, we have identified scientific evidence
  • user tested - all information is sent to a panel of parents and carers
  • regularly reviewed - we have made a commitment to review all information every three years - or more often as needed - to make sure it is up-to-date and accurate
  • Royal College of Paediatrics and Child Health shall hold responsibility for the accuracy of the information they public and neither the Scheme Operator nor the Scheme Owner shall have any responsibility whatsoever for cost, losses or direct or indirect damages or cost arising from inaccuracy of information or omissions in information published on the website on behalf of Royal College of Paediatrics and Child Health.

Download our Information Standard policy statement 

Read more about the Information Standard

infoKID information is only provided in English. Please contact us if you are interested in translating any of our leaflets to another language. We will ask you to include this disclaimer:

This is a translation of InfoKid: information for parents and carers, from www.infokid.org.uk, regarding [condition] [version information]. The English information has been prepared by The Royal College of Paediatrics and Child Health (RCPCH), British Association for Paediatric Neurology (BAPN) and the British Kidney Patient Association (BKPA). The [company/person] is responsible for the translation and adaptation to [country e.g. Hungarian] conditions. This information provides guidance and supportive information only, and it is important that you contact your doctor if you are uncertain about the healthcare or treatment your child is receiving. 

Who is behind infoKID?

infoKID is a partnership project of three organisations.

RCPCH logoRoyal College of Paediatrics and Child Health

The RCPCH, founded in 1996, has over 13,500 members – paediatricians, or children’s doctors – who live in the UK, Ireland and abroad. The College has a major role in postgraduate medical education and professional standards. Its mission is to transform child health through knowledge, innovation and expertise.

More about RCPCH

BAPN logoBritish Association for Paediatric Nephrology

The BAPN sets out to improve the standard of medical care of children with kidney disease in the UK. It formulates opinions on policy, and runs clinical and scientific meetings to advance the knowledge and skills of doctors with responsibility for children with kidney disease.

The BAPN conducts collaborative research into children's kidney conditions. it also considers the training, continuing education and professional development of children's kidney doctors.

More about BAPN

BKPA logoBritish Kidney Patient Association

BKPA improves the lives of kidney patients with kidney disease by giving support, information and grant aid. They help kidney disease patients, families and kidney units during times of need.

BKPA funded the development of infoKID.

More about BKPA