My Life, Our Future

My Life, Our Future - Research Repository

My Life, Our Future logo

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 applied for access by submitting a Letter of Intent on or before March 15, 2017 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.

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.

Although the 2017 application cycle is now closed, additional information about the application process for the MLOF Research Repository is available in the 2017 RFP and Application Form.

Please note the following key dates:

Introductory Webinars for Prospective Applicants – View recorded webinar by registering here February 16, 4:00pm/ET
February 17, 12:00pm/ET
Deadline for Letters of Intent 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.

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)
Department of Pathology & Molecular Medicine, Richardson Laboratory

Queen’s University, Kingston, Ontario, CANADA

Michelle Alabek, MS, CGC

 Hemophilia Center of Western Pennsylvania
Pittsburgh, PA

Craig Muir
Non-physician Patient Representative

Boston, MA

Karl Desch, MD
University of Michigan Pediatric Neonatology
Ann Arbor, MI

Glenn Pierce, MD, PhD
Research Scientist
La Jolla, CA

Jorge DiPaola, MD

Mountain States Hemophilia & Thrombosis Center

University of Colorado, School of Medicine

Aurora, CO

Alex Reiner, MD, MSC
University of Washington and Women’s Health Initiative Coordinating Center at the Fred Hutchinson Cancer Research Center
Seattle, WA

Elizabeth Hauser, PhD
Duke University Medical Center

Durham, NC

Frits Rosendaal, MD
Leiden University Medical Center
The Netherlands

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.

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