What Is a Biorepository?
A biorepository is a place, similar to a library or bank, where biological samples are stored for use in research.
Biological samples are collected from patients who provide consent to physicians and researchers to use their blood or bodily fluids for scientific and medical research.
Biorepository samples come in many different forms: blood, urine, stool, tissue, and other material. These samples are stored under appropriate conditions that ensure they are preserved for future analysis.
Biobanked Samples Available
Since 2006, the Cystic Fibrosis Foundation has collected and stored samples from a variety of clinical trials. The CF Foundation has developed a database that combines information from these samples with data from CF clinical trials and the CF Foundation Patient Registry to create a unique and specific sample profile.
For more information, contact Emily Zagnit, MPH, senior clinical research development specialist at the CF Foundation, at ezagnit@cff.org.
Biobanked Samples
- AquADEKs
- AZ0004 (Randomized)
- BALF
- BEGIN - Part A
- BEGIN - Part B
- Biomarkers for Pulmonary Exacerbation (Sagel)
- BONUS - Baby Observational and Nutrition Study
- BONUS - Healthy Matched Controls
- CF Metabolomic Biomarkers (SAAVED09A0)
- eICE Home Monitoring Early Intervention (Goss/Lechtzin)
- EPIC Clinical
- EPIC Observational
- GOAL - G551D Observational Study (Core)
- GOAL - Expansion
- GOAL - Extension
- GROW - Glutathione in Young Children
- MAYFLOWERS
- PATIENCE
- PREDICT
- PROMISE
- PROMISE - Pediatric Cohort
- PROSPECT Prospective Biomarkers Study
- STOP 2 (FLUME15A0, GOSS15A0, HELTSH15A0, SANDER15A0, WEST15A0)
- STOP-360
- Two-Year Longitudinal Evaluation of HRCT
- Wisconsin Newborn Screening Study
- AREST-CF Biobank
- Primary Airway Cell BioBank
- SHIELD CF Biorepository
Clinical Sample Acquisition Process
The Cystic Fibrosis Foundation is accepting applications from qualified investigators who wish to gain access to biospecimens and clinical trial data for use in translational scientific research. Applications undergo a comprehensive review for scientific merit and impact.
All applicants must submit a Letter of Intent (LOI) so the CF Foundation can assess the feasibility of samples being requested and evaluate the impact the request will have on the biobank.
Accepted LOIs will be asked to submit a full application that will undergo a committee review and scoring to examine the scope and goals of the research project.
The CF Foundation provides guidance to investigators about areas of CF research that it considers to be high priorities for scientific evaluation.
The following are key focus areas:
- Validating candidate markers of lung function decline, lung injury, and inflammation
- Identifying biomarkers for monitoring CFTR function
For more information, contact Emily Zagnit, MPH, senior clinical research development specialist at the CF Foundation, at ezagnit@cff.org.
For Qualified Investigators
Other External Biorepositories
The Australian Respiratory Early Surveillance Team for Cystic Fibrosis (AREST-CF) has been collecting and storing samples in a biorepository since 1999. Multiple clinical trials and international collaborations form the basis for the sample diversity.
Researchers interested in accessing the AREST-CF biobank samples can contact Nat Eiffler, program manager, at nat.eiffler@telethonkids.org.au, to get more details about the application process to initiate a review by the AREST-CF Scientific Management Committee for scientific merit and biobank impact.
Canada
Primary Airway Cell Biobank
The Primary Airway Cell Biobank (PACB) has been collecting and biobanking samples since 2009. The PACB provides primary airway epithelial cells from normal donors, and donors who have CF and other airway diseases (e.g., asthma, COPD). Cells originate from a large variety of donors from North America and Europe with different genetic backgrounds.
The PACB is a biobank certified by the UBC Office of Biobank Education and Research Biobank Certification Program, affiliated with the International Society for Biological and Environmental Repositories (ISBER).
Researchers interested in accessing the PACB biobank samples are invited to contact Dr. Annick Guyot at annick.guyot@mcgill.ca to get more details about the types of samples available and the application review process.
Program for Individualized CF therapy
The Program for Individualized CF Therapy (CFIT) is a collaboration between Cystic Fibrosis Canada, SickKids Foundation and The Hospital for Sick Children to develop an accessible resource that will accelerate the development of precision medicine for the treatment of each individual living with CF. The program is generating high quality sequence data and cell samples from 100 CF patients: primarily individuals who are homozygous for F508del, or homozygous for a variety of rare mutations including W1282X, G551D, G85E, R334W, D1152H, M1101K, 621+1G>T and others. Nasal cell cultures are generated for each individual and are available as an early passage frozen aliquot. Basic functional data for each of the patient-derived nasal epithelial cultures are available at the request of any researcher interested in accessing this resource. Studies are underway to compare gene expression after passaging to the primary tissue. High quality iPSCs are also being generated from the same patient's blood sample and provided as a well-characterized frozen aliquot (see example of the extensive characterization). For select samples, iPSCs are edited by CCRM using CRISPR-cas9 technology to generate isogenic controls.
Researchers can find the sample request form here. Those interested in learning more are invited to contact CFIT Program Manager Paul Eckford at peckford@sickkids.ca.
Ireland
The Study of Host Immunity and Early Lung Disease in CF (SHIELD CF) is a long-term multi-center translational research study based in the National Children's Research Centre in Ireland. SHIELD CF has been collecting and biobanking biological samples since 2010. Comprehensive clinical data is collected alongside biological data and stored in a secure database.
Researchers looking to partner with SHIELD CF and access biobank samples are invited to submit the SHIELD CF Collaboration Proposal Form by emailing Dr. Jenny Lennon, CF research coordinator, at lennonje@tcd.ie or Professor Paul McNally at paulmcnally@rcsi.ie.
RARE Mutation Study
The RARE Mutation Study is focused on collecting cells from patients with rare CFTR mutations to study potential treatments. Investigators will collect biospecimens from patients with two premature stop codon mutations at 6 care centers nationwide.
Researchers interested in accessing the RARE study samples should contact the CF Foundation lab through Hermann Bihler at hbihler@cff.org and Priyanka Bhatt at pbhatt@cff.org for more information.