Thank you or your interest in the Epidermolysis Bullosa Clinical Research Consortium (the “EBCRC”). The purpose of the EBCRC is to facilitate collaborative clinical research on Epidermolysis Bullosa that will lead to improvements in EB patient outcomes. The EBCRC database (also called the EB Clinical Characterization and Outcomes Database) is designed to support longitudinal studies of patient outcomes. It is open and accepting data.
To encourage participation in the EBCRC, EB Research Partnership (“EBRP”), together with Epidermolysis Bullosa Medical Research Foundation (“EBMRF”), invites applications for financial support from medical centers which are either currently enrolling or wish to enroll patients in the EBCRC database. EBRP and EBMRF may award “sub-grants” to fund a portion of salary and benefits for a research coordinator or research assistant supporting the activities of the EBCRC database under the direction and supervision of a principal investigator caring for EB patients. The award period will be August 31, 2021 to August 30, 2022, unless specified otherwise in the grant application.
Applicants should complete and submit the following applicant form on or before July 30, 2021. Applications will be evaluated by EBRP and EBMRF. Applicants selected for an EBCRC sub-grant will receive a notice of award from EBRP by email with further instructions for finalizing funding and other arrangements.
We look forward to hearing from you!
General Terms and Conditions Applicable to Grant Recipients
- Grant recipients will be required to submit a brief report at least every six months during the award period and at the conclusion of the award period. Reports should contain a summary of the applicant’s EBCRC activities, as well as any issues or concerns of the applicant regarding the EBCRC.
- Under no circumstances may any portion of an award be allocated to indirect costs.
- Newly acquired patient data must be entered in the database within 90 days of the sub-grant award date, and all previously acquired data must be enrolled in the database within 6 months of the sub-grant award date.
- Grant recipients must at all times maintain complete and accurate books and records in regard to EBCRC sub-grants and make such books and records reasonably available for inspection upon request.
- Grant funds may be withheld at any time pending resolution of a dispute with respect to the use of funds by grant recipients and/or the satisfaction of any conditions and requirements of the grant. Grant recipients must promptly return any portion of an award that has not been expended for the purposes of the grant at of the end of the award period. A no-cost extension may be requested to support ongoing study activities.
- Applicants must promptly furnish any information concerning a change or a proposed change in the grant recipient’s 501(c)(3) tax-exempt status. Any such change or revocation of the grant recipient’s 501(c)(3) status may result in the immediate termination of the award.
- Grant recipients, EBRP and EBMRF will at all times comply with applicable laws regarding the confidentiality of clinical patient’s medical records and other health information, will hold the clinical patients’ personal identifying information in confidence and will act in accordance with the HIPAA Authorizations.