European Rare Blood Disorders Platform (ENROL)

Launched by HOSPITAL UNIVERSITARI VALL D'HEBRON RESEARCH INSTITUTE · Feb 6, 2024

Keywords

ClinConnect Summary

The ENROL trial, also known as the European Rare Blood Disorders Platform, is focused on improving the understanding and treatment of rare blood disorders, which include conditions like anemia, leukemia, and sickle cell disease. The goal of this study is to gather and connect important data about these diseases across Europe. By creating a centralized platform, ENROL aims to ensure that information about patients, their treatments, and outcomes is shared effectively while protecting patient privacy. This will help researchers and healthcare providers better understand these conditions, identify gaps in care, and improve healthcare resources for patients.

To participate in the ENROL study, individuals must be between 0 and 100 years old and have a diagnosed rare blood disorder as classified by a specific system. Participants should also be willing to provide consent for their information to be used in this research. By joining the study, participants can expect their health data to be collected in a user-friendly way, which will ultimately contribute to better treatment options and outcomes for those with rare blood disorders in the future. This trial is currently recruiting participants and is set to run for three years, starting from June 2020.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • Patients must meet all of the following criteria to be included in the ENROL Registry
• • Age from 0-100, both female and male
• • Diagnosed as RHDs according to ORPHANET classification
• • Able and willing to provide written informed consent (patient or legal representative for minors) if needed according to national legislation.
• Exclusion Criteria:
• • Patients diagnosed as traits or trait conditions for other recessive RHDs