Welcome to the MLOF Research Repository

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. The project is a partnership between ATHN, Bloodworks Northwest, the National Hemophilia Foundation, and Bioverativ (formerly Biogen Hemophilia).

In early 2017, MLOF reached its 5,000+ enrollment milestone and ATHN opened the repository to researchers. During the first review cycle, research applications were evaluated by the MLOF Research Review Committee, an independent, international multidisciplinary group of experts, including a molecular pathologist, genetic counselor, research scientist, molecular biologist, genetic epidemiologist, two hematologists, and a non-physician patient representative.

Seven research projects were accepted based on scientific merit and level of benefit to those with bleeding disorders. Projects will investigate inhibitor development, bleeding specific to hemophilia A and B, as well as carriers, and F8 clearance. Check back to learn more about the approved research projects.

The initial cycle of research applications to access the MLOF Research is now closed. Any updates about future access to the repository will be posted here.

If you are a researcher interested in learning more about the My Life, Our Future Research Repository, contact MLOFresearch@athn.org.

The MLOF Research Repository contains de-identified biologic samples and data from nearly 10,000 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).

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.

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.

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.

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

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

Jorge DiPaola, MD
Mountain States Hemophilia & Thrombosis Center
University of Colorado, School of Medicine
Aurora, CO

Elizabeth Hauser, PhD
Duke University Medical Center
Durham, NC

Craig Muir
Non-physician Patient Representative
Boston, MA

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

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

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.