Data Collection of Standard Care and Evaluation of NHLBI Patients and Donors

Launched by NATIONAL HEART, LUNG, AND BLOOD INSTITUTE (NHLBI) · Jun 27, 2020

Keywords

ClinConnect Summary

This study is not testing a new medicine. It’s an observational project that aims to gather and organize information from people who are seen at the National Heart, Lung, and Blood Institute (NHLBI) or who donate stem cells. Researchers will review medical records, routine tests, scans, and other standard-care information to create a large data repository. The goal is to support future research ideas and help train doctors and staff to improve care.

Who can join and what to expect: people age 2 and older (weighing more than 12 kg) who have or are suspected to have a condition that brings them to NHLBI, or who are stem cell donors, may be invited to participate. Participation includes patients and healthy volunteers, and entry is by invitation. Data will come from standard care, and information will be kept securely. Participation lasts up to 2 years, and if any treatment is given as part of standard care, a separate consent will be needed for that treatment. The study does not involve experimental treatments, and it aims to enroll about 10,000 people. The overall project plans to keep and use the collected information for many years to help future research.

Gender

ALL

Eligibility criteria

• * ELIGIBILITY:
• • 1. Patients (including those referred to us to rule out a disease or condition) and stem cell donors, may be entered on this protocol at the discretion of the Principal and/or Associate Investigators.
• • 2. The patient or the patient's Legally Authorized Representative is capable of informed consent and signs the consent form. The consent form will be signed by parents or guardians of patients under the age of 18.
• • 3. Age more than or equal to 2 and weight \> 12 kg