Article type
Year
Abstract
Background. Reuse of trial data is becoming increasingly popular. However, the most readily available outcomes are not necessarily the most relevant ones from the patient’s point of view. The International Prediction of Pregnancy Complication (IPPIC) Network of global researchers has access to the largest global Individual Participant Data (IPD) repository and holds IPD of women with over three million pregnancies. The IPPIC repository was initially established to develop a prediction model for pre-eclampsia but has been further expanded to predict stillbirth, spontaneous preterm birth and fetal growth restriction.
Objective. We aim to evaluate how important from women’s point of view are adverse pregnancy outcomes selected by clinicians as important in the context of fetal growth restriction and available in the IPPIC repository.
Methods. With the assistance of a local PPI group, we designed a questionnaire (only in English) that will be distributed among women attending the antenatal clinic. In the questionnaire, we will ask women whether in the past or current pregnancy they experienced fetal growth restriction (baby’s slow growth) and to rank the importance of listed adverse pregnancy outcomes on a scale from one (not important) to five (very important). We aim to collect at least 50 questionnaires to gain a wide range of opinions. The results will be tabulated and presented as a median and interquartile range.
Results & conclusion. Reuse of IPD repositories is increasingly popular and proffers good value for money and effort invested in the conduct of the original studies. It is logistically challenging or impossible to add new data, but it is possible to assess the value of available data from healthcare consumers’ point of view. We will provide a detailed description of our findings and their implication for reuse of repository data.
Objective. We aim to evaluate how important from women’s point of view are adverse pregnancy outcomes selected by clinicians as important in the context of fetal growth restriction and available in the IPPIC repository.
Methods. With the assistance of a local PPI group, we designed a questionnaire (only in English) that will be distributed among women attending the antenatal clinic. In the questionnaire, we will ask women whether in the past or current pregnancy they experienced fetal growth restriction (baby’s slow growth) and to rank the importance of listed adverse pregnancy outcomes on a scale from one (not important) to five (very important). We aim to collect at least 50 questionnaires to gain a wide range of opinions. The results will be tabulated and presented as a median and interquartile range.
Results & conclusion. Reuse of IPD repositories is increasingly popular and proffers good value for money and effort invested in the conduct of the original studies. It is logistically challenging or impossible to add new data, but it is possible to assess the value of available data from healthcare consumers’ point of view. We will provide a detailed description of our findings and their implication for reuse of repository data.