Patient Empowerment and Involvement in Research.

Patients with rare diseases often face difficulties in clinical care due to the low prevalence of their diseases and the resulting healthcare professionals' lack of expertise. Valid and standardized guidelines for clinical management are also lacking due to the scarcity of research and the variability of the clinical expressivity within each disease. In addition, in cases of rare diseases, the patient and health professional relationship may not fit with the traditional assumptions of medical care. Although the communication process between patients and healthcare professionals shares most of the general features of the standard patient-health professional interaction, rare diseases may be burdened with additional issues.In this sense, clinical decision-making in an uncertainty context should take advantage of involving patients in deeper informational process to promote valid shared decision-making between patients/caregivers and healthcare professionals. This process of patient/caregiver empowerment is a priority in the context of rare diseases, as it encourages acquisition of information that will help improving patient-healthcare professional's interaction, and building a collaborative relationship. It is also a chance for healthcare professionals to learn about rare diseases from the perspective of patients.Engagement of patients and other stakeholders in clinical research may help to ensure that research efforts in rare diseases address relevant clinical questions and patient-centered health outcomes. However, the effectiveness of patient-engagement approaches, particularly for the study of rare diseases, has not been well studied.

Methodological aspects of the study of dietary patterns during pregnancy and maternal and infant health outcomes. A systematic review.

The objective of the present study was to systematically review the literature exploring the associations between different dietary patterns obtained from Food Frequency Questionnaires during pregnancy and the development of health-related maternal and infant outcomes in the Framework of the EURRECA Network of Excellence. A systematic search was conducted on Pubmed for literature published up to September 2009. The search strategy resulted in an initial amount of 2048 articles. After applying the selection criteria, seven studies were finally identified. Five articles were based on prospective cohort studies and the other two were case-control studies. The methods used to elaborate the dietary pattern could be classified as hypothesis-oriented (three studies) or empirically-derived (four studies). The different food frequency questionnaires used for diet assessment were self-administered, semi-quantitative and had been previously validated, but just four studies employed questionnaires validated specifically for their use in a pregnant population. The divergent methods used to assess the dietary patterns make it difficult to compare results. However, some resulting recommendations can be applied when dietary patterns during pregnancy are analyzed: to employ a validated food frequency questionnaire designed for use in pregnancy, to consider the special role exerted by mineral and vitamin supplements in this particular population group, to adequately select the time in which dietary data is collected, to adjust the results for life-style and educational characteristics, and in the case of hypothesis-oriented dietary patterns, to correctly choose the components comprising the score.