23/06/2024
On , we revisit our publication, "A patient-centred and multi-stakeholder co-designed observational prospective study protocol: Example of the adolescent experience of treatment for X-linked hypophosphataemia ( )", a diverse team of expert physicians, researchers, technology specialists, patients, and caregivers came together to co-design a prospective observational study on hashtag , a rare disease affecting adolescents.
Collaboration and patient engagement were key in ensuring the study's success. The research team worked together to identify relevant research questions, select appropriate outcome measures, and assess the feasibility and acceptability of data collection methods.
By involving patients, caregivers, and clinicians in the study design, the researchers ensured a patient-centric approach and gained valuable insights into the lived experience of the disease and its treatments.
This patient-centric approach allowed for flexible research methods and a deep understanding of the disease, which is especially important for rare diseases where knowledge may be limited.
Read the paper here 👇
https://hubs.li/Q02CPz530