The Red Book Survey
A discussion with a family over breakfast at the 14th International Symposium on MPS and related diseases back in 2016 led to the conception of the ‘Red Book’ study by the UK MPS Society, who were awarded a Patient Advocacy Leadership Award in June, 2018.*
The mother of a child with Morquio (MPS IVA) mentioned that he had been large at birth, measuring 57 cm long, and weighing 9lbs 12 oz. When the MPS Society talked to other parents of children with MPS IVA they heard similar stories of large babies at birth.
The MPS Society wondered at what point individuals with MPS go from an above average percentile to a below average percentile on the growth charts and if there are any anomalies in milestones, which together demonstrate a pattern that could indicate an early marker of an MPS disorder.
The Personal Child Health Record or ‘Red Book’ as it is more commonly called is the main national standard of a child’s health and development in the UK. It is given to parents/carers at a child’s birth, with growth and milestones measured for the first few years of their life. The parent/carer retains the ‘Red Book’ and healthcare professionals update the record each time the child is seen in a healthcare setting.
An online survey was developed (for completion via a tablet or smart phone), to capture a combination of self-reported data and information from the ‘Red Book’, including:
- Pregnancy and birth
- Birth weight
- Head circumference (cm)
- Length at birth (cm)
- Healthcare professional assessments**
- Growth charts**
- Developmental milestones**
- Age at diagnosis
- Healthcare professional who made diagnosis
**via photographs of selected pages uploaded to survey
The study population is UK based MPS Society members (aged 18 years and above), who have their child’s ‘Red Book’ and whose child has/had:
- MPS I (Hurler, Hurler Scheie, Scheie)
- MPS II (Hunter)
- MPS III (Sanfillippo)
- MPS IV (Morquio)
- MPS VI Maroteaux Lamy
- MPS VII (Sly)
- MPS IX Natowicz
The MPS Society plan to share the results at lysosomal storage disease symposia including WORLD and the International Symposium on MPS and Related Diseases, and publish in a peer-reviewed journal.
The survey will be completed on a phone or tablet and involve the user answering a few questions and taking photographs of selected pages of their Red Book. If you would like to take part in the survey follow the link below on a tablet or smart phone.
*The MPS Society have commissioned MPS Commercial to carry out this study. MPS Commercial is a wholly owned, not for profit subsidiary of the Society for Mucopolysaccharide Diseases (MPS Society, UK) whose social objectives are to reinvest any profits for the purposes of education, enhancing needs‐led advocacy support, quality of life (QoL) research and scientific research to the MPS community