CP-North: Living Life with Cerebral Palsy in the Nordic Countries?

In CP-North a highly qualified multidisciplinary team of researchers from all major Nordic countries will address a number of societal challenges associated with living with, or being a parent of a child, with a life-long disability in Norden by merging data from national registers with unique health data from quality registers.

Cerebral palsy (CP) is rare, although still considered the most common musculoskeletal childhood disability. Yet, most persons with CP are actually adults. How persons with CP fare in life in terms of health, quality of life, education, employment, and income is virtually unknown. Parents of children with CP −both young and grown-up− are often under emotional and practical strain yet very little is known about how these parents fare, in terms of, for example, health-, stress-, employment-, and income. It is known that many parents of children with multifaceted disabilities reduce their work hours to care for their child. Although the Nordic countries are known for their strong welfare systems it is unknown to what extent the added burden related to disability are actually compensated for.

CP-North is a research project that in collaboration with the NordMAN initiative will combine health and registers data from all Nordic countries in order to create the world's largest dataset of both persons with CP, their parents, and controls from the general population. The knowledge that will be gained by studying the social- and health challenges previously described throughout the lifespan is expected to influence not only how the social support systems in the Nordic countries are constructed but also how the healthcare is organized for this population. Findings will also be of interest to the international community as the size, richness, and generalizability of the data set of the Nordic registers will allow CP-North researchers to investigate questions that simply cannot be studied elsewhere. In addition, by focusing on differences in social support and health care between the Nordic countries, CP-North will also capture Nordic experiences on successful and unsuccessful policies for the group, allowing the countries to learn and benefit from each other.