Registries - Pediatric Heart Failure Registry > Steering Committee
INTERNATIONAL PEDIATRIC HEART FAILURE REGISTRY (IPHFR)
- The Chair of the IPHF Registry Steering Committee shall be appointed by the Board of Directors for a three-year term, renewable once.
- One representative to the Committee shall be appointed by each collective actively submitting data to the Registry.
- The biostatistician for the Registry shall serve a member of the Committee.
- Additional Committee members will be selected by the Chair and approved by the Board. Such Committee members shall be selected to ensure specialty expertise and geographic representation from areas contributing to the Registry. Such Committee members will be appointed to serve 3-year staggered terms.
- Before the appointment of a new Committee member is due, relevant Council Chairs shall be asked to solicit nominations from among their Council's membership for appointment to the Committee and shall submit such nominations to the Chair for consideration.
- The Chair may receive an annual stipend if determined by the Board of Directors to be warranted.
- The Chair must report to the Board to include the following:
- Summary of the prior year data collection
- Status of deliverables from the prior year
- List of publications arising from the registry during the prior year
- Assessment of need to continue to operate the registry
- Plans for the coming year including proposed deliverables / publications
- The duties of the Chair shall include maintaining the scientific integrity of the Registry, working within the budget as set by the Board of Directors, and achieving the goals and objectives set for the Registry.
- Oversee the implementation of the registry and monitor its ongoing progress, participation rates, and cost benefit ratio.
- Ensure the deliverables charged by the Board are met on a timely basis.
- Conduct regular evaluations regarding the need to continue to operate the registry.
- Identify and revise, as needed, data collection fields and definitions that facilitate the collection of appropriate information.
- Interface with governmental agencies, international transplant networks, and individual centers to encourage their submission of data to the Registry and to enhance compliance with data submission.
- Review abstracts and manuscripts generated with the use of Registry data prior to submission for peer-review/publication.
- Review results of data collection and produce regular Annual Data Reports.
- Authorize, review, and approve the submission of requests for access to the data for scientific studies.
- Initiate and facilitate data analysis projects.
- Oversee compliance with data use agreements.
- Achieve the goals and objectives established annually by the Board for the Registry
Hospital for Sick Children
Toronto, ON, CANADA
Stanford University School of Medicine
Stanford, CA, USA
University of Colorado
Aurora, CO, USAscott.firstname.lastname@example.org
University of Sao Paulo
Sao Paulo, BRAZIL
United Network for Organ Sharing
Richmond, Virginia, USA
UT Southwestern Medical Center
Dallas, TX, USA
Lucile Packard Children's Hospital
San Francisco, CA, USA
Kansas City, KS, USAapbarnes@cmh.edu
University of Michigan
Ann Arbor, MI, USA
Ann & Robert H Lurie Children's Hospital
Chicago, IL, USA
Stollery Children's Hospital
Edmonton, AB, Canada
Columbia University Medical Center
New York, NY, USA