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About our research

We are a Swedish research group dedicated to improving the quality of life for childhood cancer survivors. By mapping and studying the long-term effects of cancer treatment, we identify challenges and develop solutions that can make a difference both clinically and in everyday life. Our research projects range from registry studies to intervention studies, and we collaborate with leading researchers and healthcare professionals both nationally and internationally. The goal is to provide survivors with better tools to manage late complications and improve their quality of life.

SCARP

In the SCARP project (Swedish Cardiopulmonary Registry Project), led by Annika Rosengren and Gustav Smith, we use Sweden's extensive national registries to study cardiovascular diseases and metabolic complications in childhood cancer survivors. One subproject focuses on approximately 11,000 individuals who have survived at least five years after a childhood cancer diagnosis, compared to a control group from the general population.

The project combines detailed treatment data – such as radiation and chemotherapy – with lifestyle factors. This allows us to map how the risks for cardiovascular diseases vary based on treatment history and lifestyle. The childhood cancer analyses are funded by The Swedish Childhood Cancer Fund, The Swedish Research Council, The Swedish Government through the ALF Agreement, Gothenburg Medical Society, and Sahlgrenska Academy International Starting Grant.

NOPHO-CARE

NOPHO-CARE is a comprehensive initiative aimed at improving follow-up care for childhood cancer survivors across the Nordic countries. In Sweden, over 11,000 individuals are registered in NOPHO-CARE, of whom more than 7,000 are adults treated for cancer as children. Päivi Lähteenmäki serves as the international research leader for NOPHO-CARE, with Aron Onerup as the national leader.

Within NOPHO-CARE Sweden, we collect information from both registries and self-reported data via electronic questionnaires. These questionnaires cover areas such as quality of life, mental health, physical function, and lifestyle factors, including physical activity, smoking, and alcohol consumption.

This data is then linked to national registries, enabling us to identify connections between individuals’ experiences and their long-term health outcomes. The project is unique in its scale and use of validated instruments, such as PROMIS and EQ-5D, which facilitate international comparisons. This work creates a platform for future clinical studies, where survivors can be offered targeted interventions based on their reported needs and risk profiles. In this way, NOPHO-CARE contributes both to better research and improved care for this patient group. The work with NOPHO-CARE Sweden is funded by The Swedish Childhood Cancer Fund, The Swedish Research Council, The Swedish Government through the ALF Agreement, Gothenburg Medical Society, and Sahlgrenska Academy International Starting Grant.

MOVE

Physical activity is a vital part of recovery after childhood cancer treatment. In this project, we explore how a high-intensity exercise intervention can enhance recovery for children treated for medulloblastoma, a common type of brain tumor. Treatment for medulloblastoma often includes radiation and chemotherapy, which can cause significant physical and neurocognitive side effects. The project aims to help children regain physical strength, motor function, and improve their daily quality of life.

The intervention is delivered digitally through video meetings with physiotherapists, allowing participants to exercise at home and reduce travel to hospitals. The exercise program is individually tailored and includes both aerobic and resistance training, with heart rate monitoring to ensure proper intensity. This study serves as a pilot for a larger European multicenter study where physical activity is integrated as part of standard treatment for medulloblastoma. The goal is to demonstrate that early exercise after treatment can reduce the long-term effects of cancer therapy and improve survivors’ quality of life. The study is financed by The Swedish Childhood Cancer Fund, The Swedish Government through the ALF Agreement, and Sahlgrenska Academy International Starting Grant.

St. Jude Lifetime Cohort Study och Childhood Cancer Survivor Study

In collaboration with international research networks, including SJLIFE (St. Jude Lifetime Cohort) and CCSS (Childhood Cancer Survivor Study), we explore the connections between lifestyle factors and late complications after childhood cancer. Analyses have shown that healthy lifestyles can reduce the risk of complications such as heart failure, depression, and reduced quality of life. Our findings indicate that lifestyle changes can have an impact comparable to reduced exposure to treatments like radiation and chemotherapy.

The study also aims to calculate how much of the disease burden can be prevented through lifestyle improvements. By linking these findings to Swedish registry data, we are creating a model to assess and prioritize preventive measures. This work lays the foundation for future interventions both nationally and internationally, strengthening research on late complications and lifestyle factors in childhood cancer survivors.