My Life, Our Future
My Life, Our Future - Research Repository Now Open!
Biologic samples and data are available to qualified researchers for study. Apply to access the repository today!
My Life, Our Future (MLOF) is a nationwide program created to help unlock the mysteries of hemophilia by compiling genotypic data and biologic samples into the world’s largest research repository of its kind. MLOF provides genotyping of the F8 and F9 genes for people with hemophilia A and B, as well as confirmed and potential carriers.
MLOF is a partnership between the American Thrombosis and Hemostasis Network (ATHN), Bloodworks Northwest, the National Hemophilia Foundation, and Bioverativ (formerly Biogen Hemophilia). On behalf of our partners, ATHN is excited to announce that MLOF has reached its 5,000+ enrollment milestone—and the Research Repository is now available to support scientific research!
How can researchers access the repository?
Researchers interested in the MLOF Research Repository are encouraged to apply for access by first submitting a Letter of Intent for review by the MLOF Research Review Committee. Full proposals for select projects will then be invited for submission. Researchers are encouraged to collaborate with a participating HTC to help in the translation of research findings. Details of the application process are available in the MLOF Research Repository Request for Proposals and Application Form.
The Letter of Intent, which is requested to determine eligibility, technical feasibility as proposed, and scientific integrity, must be submitted to MLOFresearch@athn.org.
The Invited Full Proposal must also be submitted to MLOFresearch@athn.org. Additional information about the proposal requirements is available in the MLOF Research Repository Request for Proposals and Application Form.
A MLOF Agreement governing materials transfer and data sharing will be executed with approved applicants before biologic samples or data are released.
Note: Applications accepted in 2017 are limited to U.S.-based researchers. Researchers may submit one application for consideration during this cycle. We plan to accept international applications in 2018.
Please note the following key dates:
|Introductory Webinars for Prospective Applicants – Register here||February 16, 4:00pm/ET
February 17, 12:00pm/ET
|Deadline for Letters of Intent MLOF Research Repository Request for Proposals and Application Form – Submit via email to MLOFresearch@athn.org||March 15, 2017|
|Invitation for Full Proposals||April 15, 2017|
|Full Proposals Due – Submit via email to MLOFresearch@athn.org||May 30, 2017|
|Full Proposal Review Decision||June 30, 2017|
If you have any questions about accessing the MLOF Research Repository, please contact MLOFresearch@athn.org for more information.
What is the source of the research samples and data?
The MLOF Research Repository contains de-identified biologic samples and data from more than 5,000 people with hemophilia A and B, as well as confirmed and potential carriers, who are currently receiving care at one of more than 100 participating hemophilia treatment centers (HTCs) across the U.S. MLOF participants give Institutional Review Board (IRB)-approved written informed consent for the study, including for whole genome sequencing and deposition into databases such as the National Center for Biotechnology Information (NCBI) database of Genotypes and Phenotypes (dbGaP). MLOF is still open for participant enrollment.
All biologic samples are sent to Bloodworks Northwest where genotyping of F8 and F9 genes is performed using a next-generation sequencing approach. Variants identified with next-generation sequencing are then confirmed using a standard clinical laboratory procedure specific to the variant. The phenotypic data are derived from the ATHNdataset, a HIPAA-compliant limited data set. Download the ATHN Data Dictionary.
What is included in the repository?
The following biologic samples and data from consenting MLOF participants are available through the MLOF Research Repository and ATHNdataset:
- Genotyping data: F8 sequence, F9 sequence
- Phenotypic data: Bleeding disorder diagnosis, disease severity, inhibitor status, age, gender, race, ethnicity
- Specimens: DNA, RNA, plasma, serum
All participant biologic samples and data are de-identified to ensure anonymity. Additional information about what is available is included in the MLOF Research Repository Request for Proposals and Application Form.
What are the characteristics of the MLOF cohort?
The MLOF cohort comprises a racially and ethnically diverse group of children and adults with severe, moderate, and mild hemophilia A and B, as well as an increasing number of confirmed and potential carriers. For more information, download the MLOF cohort characteristics.
Who determines access to the repository?
To determine the feasibility and scientific integrity of proposed projects, applications will be reviewed by the MLOF Research Review Committee, an independent, international, multidisciplinary panel managed by ATHN. Members include:
David Lillicrap, MD, PhD, FRCPC (Committee Chair)
Michelle Alabek, MS, CGC
Karl Desch, MD
Glenn Pierce, MD, PhD
Jorge DiPaola, MD
Alex Reiner, MD, MSC
Elizabeth Hauser, PhD
Frits Rosendaal, MD
Note: Any reviewer with a direct conflict of interest is recused from the entire review process. Any reviewer with an indirect conflict of interest (such as a close professional relationship with any applicant, or previous involvement in applicant’s proposed project) is recused from reviewing the specific application in question. Bioverativ and/or other industry representatives are not included on the review committee.