Data Sharing and Data Management Plans [HRA Members Meeting, Virtual, Spring 2021]

Per a recent survey to HRA membership, several organizations have a data-sharing/management policy in place or are considering developing one. This session will highlight the experiences of a few organizations currently implementing these policies. We will hear about specific aspects of their policies and implementation practices including: definition of a robust data-sharing/management plan, guidance to researchers on how to create a robust plan and specific repositories or tools to use, and what a robust plan looks like, internal compliance practices, and more. This presentation follows a webinar held on Tuesday, February 23 where HRA members heard directly from the National Institutes of Health (NIH) and Congressionally Directed Medical Research Programs (CDMRP) about the evolution of two different federal data management plans and how private funders can forward the data-sharing agenda.

Moderator
Erik Lontok, PhD
Director of Research | Barth Syndrome Foundation

Dr. Erik Lontok is the Director of Research at the Barth Syndrome Foundation (BSF). Responsible for the Foundation’s research grantmaking and contracts, Erik also serves as the scientific ambassador for BSF, facilitating collaborations amongst Barth syndrome researchers and external partners. He most recently served as the Chief Science Officer of the Lipedema Foundation wherein he successfully engaged novel researchers, key clinical leaders, and patient advocates to launch the first ever lipedema research program, while helping drive and develop the lipedema patient registry to engage individuals in research participation. Prior to the Lipedema Foundation, Erik served as a Senior Associate with the Milken Institute, wherein he led philanthropic research efforts in inflammatory bowel disease, leukemia, funding academic research, and lipedema. Alongside NIH, FDA, pharmaceutical, and academic partners, Erik facilitated multi-stakeholder collaborations to advance the regulatory science of hepatitis C virus, human immunodeficiency virus 1, and viral deep sequencing at the Forum for Collaborative Research. Erik graduated with a PhD in Biochemistry from the University of California, San Francisco, and upon moving to the Maryland area, served as an Adjunct Professor of Biochemistry for the University of Maryland, College Park.

Setting the Stage
Laura Mayka
Program Officer | Circle of Service Foundation

Presenters
Diomaris Gonzalez
Director of Grant Programs | Lupus Research Alliance

Diomaris Gonzalez is currently the Director of Grant Programs at the Lupus Research Alliance. The LRA is the largest private funder of lupus research. In this role, Diomaris is responsible for the administration of the research grant programs at the LRA as well as management of other aspects related to the Research Department. Diomaris transitioned from the private sector to the nonprofit sector over 15 years ago and held positions at Heifer International and the Hospital for Special Surgery. She received a master’s degree from Fordham University and subsequently completed a certificate in Non-Profit Management from the University of Arkansas.

Anna Greene, PhD
Director of Science | Alex’s Lemonade Stand

Anna Greene is currently the Director of Science at Alex’s Lemonade Stand Foundation, a leading funder of pediatric cancer research. ALSF has raised over $200 million and funded over 1,000 research projects since the start of the foundation in 2005. Anna oversees the ALSF grant portfolio through the development of new grant programs, measures the impact of current grant programs, and communicates grant impact to stakeholders. She also oversees the ALSF resource sharing process. Prior to this role, she served as the Associate Director for Regulation Education in the Perelman School of Medicine at the University of Pennsylvania. She received a Ph.D. in Chemistry from Dartmouth College and previously worked as a senior research scientist at the Eastman Kodak Company.

Natalia Volfovsky, PhD
Director, Data and Analytics | Simons Foundation

Natalia Volfovsky, Ph.D. is a Director of Data & Analytics at the Informatics department at the Simons Foundation. She came to the Foundation to oversee quantitative informatics analysis, data storage and data curation. Prior to joining the foundation in 2013, Volfovsky served as a manager of the computational genomics group at the Frederick National Laboratory for Cancer Research (FNLCR) in Maryland where she was responsible for design and development of computational methods to process and analyze genomics data. She holds an M.S. in Mathematics from Kharkiv State University, Ukraine, a Ph.D. in Computer Science from Hebrew University, Jerusalem, and completed her postdoctoral work in Bioinformatics at the Institute for Genomic Research, Maryland with Dr. Steven Salzberg.