JOB DESCRIPTION
DM1-Hub aims to be the basis for the implementation of precision medicine aspects in Spain for the benefit of patients with Myotonic Dystrophy type 1 (DM1), prioritizing better diagnosis and optimization in the use of soon-to-be-available treatments. The DM1-Hub project brings together a group of 130 professionals in the areas of research and clinical monitoring of DM1. Together they form a multidisciplinary work team with extensive experience in this pathology at the research level, which includes predoctoral, postdoctoral and senior researchers, including renowned research groups in the field of rare neuromuscular diseases and DM1 in particular.
Specifically, the team is made up of specialists in genomics, epigenetics, bioinformatics, biostatistics, proteomics, applied research and scientific dissemination. In turn, the team makes up an important network of around 70 health professionals (neurologists, neuropediatricians, neuropsychologists and nurses), in more than 50 hospitals in 10 different Autonomous Communities, who follow up with DM1 patients in their consultations. We are looking for a compromised enthusiastic and compromised nurse for DM1-Hub project. He/she would interact with nurses and other health professionals around Spain that will be doing the same tasks in another Autonomous Communities.
MAIN RESPONSIBILITIES
The contracted professional will be responsible for coordinating and monitoring participants enrolled in the DM1-Hub project, including contacting adult and pediatric patients and organizing study visits across multiple participating hospitals in Barcelona. Key responsibilities will include collecting clinical information through telephone and in-person visits, administering clinical scales and assessments, assisting participants in completing patient-reported outcome measures (PROMs), entering and validating data in the REDCap database, and identifying and resolving missing data. The individual will also participate in regular meetings with DM1-Hub investigators and team members, manage the processing, labeling, storage, and shipment of biological samples to the IGTP-GRENBA laboratory, contribute occasionally to patient workshops and scientific events, and regularly report project
Coordinate the DM1-Hub study visit staff, including the organization of training activities, ongoing supervision, and performance follow-up.
Ensure the maintenance of study records, monitor data quality, and implement quality control procedures to guarantee the accuracy, completeness, and consistency of collected data.
Contribute to the continuous improvement and updating of study protocols, including the identification and implementation of new clinical and research variables relevant to project objectives.
Support the coordination of clinical trials conducted by the Neuromuscular Research Group at Hospital Universitari Germans Trias i Pujol, working closely with principal investigators, study coordinators, sponsors, monitors, and clinical staff.
Coordinate participant recruitment activities, study visits, and follow-up schedules in accordance with study protocols and timelines.
Verify compliance with study protocols, and resolve data queries, and conduct regular data quality reviews and monitoring procedures.
Prepare study documentation for monitoring visits, audits, and inspections, ensuring that regulatory and study records are maintained appropriately.
Coordinate the collection, processing, storage, and shipment of biological samples according to protocol-specific requirements.
Act as a liaison between investigators, study participants, sponsors, contract research organizations (CROs), monitors, and healthcare professionals involved in clinical research activities.
Support investigators in participant recruitment, retention, and follow-up processes.
Participate in scientific research activities, including literature reviews, data analysis, interpretation of results, and preparation of scientific…