Rare diseases (RD) patient registries are powerful instruments that help develop clinical
research, facilitate the planning of appropriate clinical trials, improve patient care, and …

The precision oncology paradigm challenges the feasibility and data generalizability of
traditional clinical trials. Consequently, an unmet need exists for practical approaches to test …

The past decade has seen extraordinary increase in worldwide availability of and access to
several large multiple sclerosis (MS) databases and registries. MS registries represent …

Sickle cell disease (SCD) is the most common clinically significant hemoglobinopathy,
characterized by painful episodes, anemia, high risk of infection, and other acute and …

Abstract Background Clinical quality registries (CQRs) monitor compliance against optimal
practice and provide feedback to the clinical community and wider stakeholder groups …

Background The worldwide landscape of patient registries in the neuromuscular disease
(NMD) field has significantly changed in the last 10 years, with the international TREAT …

Purpose Patient-centred and value-based health-care organisations are increasingly
recognising the importance of the patient perspective in the measurement and evaluation of …

Many birth cohorts have been carried out. We performed a review of European birth cohorts
to see the countries involved, provide a panorama of the current research topics and design …

Background Little was known about the population coverage and causes of sight impairment
(SI) registration within the Caribbean, or the extent to which register studies offer insights …

Objective The contribution of patient research partners (PRPs) is well established in EULAR
recommendation development. However, in observational and registry studies, PRP …