scholarly journals DNA.Land: A digital biobank using a massive crowdsourcing approach

2017 ◽  
Author(s):  
Jie Yuan ◽  
Assaf Gordon ◽  
Daniel Speyer ◽  
Richard Aufrichtig ◽  
Dina Zielinski ◽  
...  
Keyword(s):  
Large Scale ◽  
Lessons Learned ◽  
Return Of Results ◽  
Crowd Sourcing ◽  
Direct To Consumer ◽  
Genomic Technologies ◽  
Daunting Task ◽  
Types Of Information ◽  
Number Of Individuals ◽  
Technical Framework

AbstractPrecision medicine necessitates large scale collections of genomes and phenomes. Despite decreases in the costs of genomic technologies, collecting these types of information at scale is still a daunting task that poses logistical challenges and requires consortium-scale resources. Here, we describe DNA.Land, a digital biobank to collect genome and phenomes with a fraction of the resources of traditional studies at the same scale. Our approach relies on crowd-sourcing data from the rapidly growing number of individuals that have access to their own genomic datasets through Direct-to-Consumer (DTC) companies. To recruit participants, we developed a series of automatic return-of-results features in DNA.Land that increase users’ engagement while stratifying human subject research protection. So far, DNA.Land has collected over 43,000 genomes in 20 months of operation, orders of magnitude higher than previous digital attempts by academic groups. We report lessons learned in running a digital biobank, our technical framework, and our approach regarding ethical, legal, and social implications.

scholarly journals DNA Compass: a secure, client-side site for navigating personal genetic information

2016 ◽  
Author(s):  
Charles Curnin ◽  
Assaf Gordon ◽  
Yaniv Erlich
Keyword(s):  
Large Scale ◽  
Genomic Data ◽  
Personal Genomic ◽  
The Public ◽  
Direct To Consumer ◽  
The Status ◽  
And Performance ◽  
Precision Medicine Initiative ◽  
Client Side ◽  
Number Of Individuals

AbstractMotivationMillions of individuals have access to raw genomic data using direct-to-consumer companies. The advent of large-scale sequencing projects, such as the Precision Medicine Initiative, will further increase the number of individuals with access to their own genomic information. However, querying genomic data requires a computer terminal – an impediment for the general public.ResultsDNA Compass is a website designed to empower the public by enabling simple navigation of personal genomic data. Users can query the status of their genomic variants for over 400 conditions or tens of millions of documented SNPs. DNA Compass presents the relevant genotypes of the user side-by-side with explanatory scientific resources. The genotypes data never leaves the user’s computer, a feature that provides improved security and performance. Nearly 2500 unique users have used our tool, mainly from the general genetic genealogy community, demonstrating its utility.AvailabilityDNA Compass is freely available on https://[email protected]

Experiences With and Lessons Learned From Developing, Implementing, and Evaluating a Support Program for Older Hearing Aid Users and Their Communication Partners in the Hearing Aid Dispensing Setting

2020 ◽  
Vol 29 (3S) ◽  
pp. 638-647 ◽  
Author(s):  
Janine F. J. Meijerink ◽  
Marieke Pronk ◽  
Sophia E. Kramer
Keyword(s):  
Large Scale ◽  
Hearing Aid ◽  
Critical Discussion ◽  
Lessons Learned ◽  
Research Note ◽  
Support Program ◽  
Large Sample Size ◽  
Long Term Effects ◽  
Communication Program ◽  
Communication Partners

Purpose The SUpport PRogram (SUPR) study was carried out in the context of a private academic partnership and is the first study to evaluate the long-term effects of a communication program (SUPR) for older hearing aid users and their communication partners on a large scale in a hearing aid dispensing setting. The purpose of this research note is to reflect on the lessons that we learned during the different development, implementation, and evaluation phases of the SUPR project. Procedure This research note describes the procedures that were followed during the different phases of the SUPR project and provides a critical discussion to describe the strengths and weaknesses of the approach taken. Conclusion This research note might provide researchers and intervention developers with useful insights as to how aural rehabilitation interventions, such as the SUPR, can be developed by incorporating the needs of the different stakeholders, evaluated by using a robust research design (including a large sample size and a longer term follow-up assessment), and implemented widely by collaborating with a private partner (hearing aid dispensing practice chain).

Experience With Grant Writing: Where Do I Even Begin?

2010 ◽  
Vol 11 (1) ◽  
pp. 21-24
Author(s):  
Nicole M. Mancini
Keyword(s):  
Lessons Learned ◽  
Economic Situation ◽  
Grant Writing ◽  
Personal Journey ◽  
Know How ◽  
Daunting Task

Abstract At first, grant writing may look like a daunting task. You may ask yourself, “Is it really worth the time and effort?” With today's economic situation, teachers and therapists need ways to supplement their programs and grants provide such an opportunity. However, many of us do not know how to get started. After a few experiences and many lessons learned, I have come to enjoy researching and writing grants to supplement my students' learning. It is well worth the time and effort. This article provides information about a personal journey, lessons learned, and resources to get you started.

scholarly journals ‘CTRL’: an online, Dynamic Consent and participant engagement platform working towards solving the complexities of consent in genomic research

2021 ◽  
Author(s):  
Matilda A. Haas ◽  
Harriet Teare ◽  
Megan Prictor ◽  
Gabi Ceregra ◽  
Miranda E. Vidgen ◽  
...  
Keyword(s):  
Large Scale ◽  
Genomic Medicine ◽  
International Standards ◽  
Security And Privacy ◽  
Genomic Research ◽  
Return Of Results ◽  
Future Research ◽  
Design And Development ◽  
Participant Engagement ◽  
Dynamic Consent

AbstractThe complexities of the informed consent process for participating in research in genomic medicine are well-documented. Inspired by the potential for Dynamic Consent to increase participant choice and autonomy in decision-making, as well as the opportunities for ongoing participant engagement it affords, we wanted to trial Dynamic Consent and to do so developed our own web-based application (web app) called CTRL (control). This paper documents the design and development of CTRL, for use in the Australian Genomics study: a health services research project building evidence to inform the integration of genomic medicine into mainstream healthcare. Australian Genomics brought together a multi-disciplinary team to develop CTRL. The design and development process considered user experience; security and privacy; the application of international standards in data sharing; IT, operational and ethical issues. The CTRL tool is now being offered to participants in the study, who can use CTRL to keep personal and contact details up to date; make consent choices (including indicate preferences for return of results and future research use of biological samples, genomic and health data); follow their progress through the study; complete surveys, contact the researchers and access study news and information. While there are remaining challenges to implementing Dynamic Consent in genomic research, this study demonstrates the feasibility of building such a tool, and its ongoing use will provide evidence about the value of Dynamic Consent in large-scale genomic research programs.

scholarly journals The graph neural networking challenge

2021 ◽  
Vol 51 (3) ◽  
pp. 9-16
Author(s):  
José Suárez-Varela ◽  
Miquel Ferriol-Galmés ◽  
Albert López ◽  
Paul Almasan ◽  
Guillermo Bernárdez ◽  
...  
Keyword(s):  
Machine Learning ◽  
Computer Networks ◽  
Real World ◽  
Large Scale ◽  
Lessons Learned ◽  
Educational Resources ◽  
Global Competition ◽  
International Telecommunication Union ◽  
International Telecommunication ◽  
Broad Audience

During the last decade, Machine Learning (ML) has increasingly become a hot topic in the field of Computer Networks and is expected to be gradually adopted for a plethora of control, monitoring and management tasks in real-world deployments. This poses the need to count on new generations of students, researchers and practitioners with a solid background in ML applied to networks. During 2020, the International Telecommunication Union (ITU) has organized the "ITU AI/ML in 5G challenge", an open global competition that has introduced to a broad audience some of the current main challenges in ML for networks. This large-scale initiative has gathered 23 different challenges proposed by network operators, equipment manufacturers and academia, and has attracted a total of 1300+ participants from 60+ countries. This paper narrates our experience organizing one of the proposed challenges: the "Graph Neural Networking Challenge 2020". We describe the problem presented to participants, the tools and resources provided, some organization aspects and participation statistics, an outline of the top-3 awarded solutions, and a summary with some lessons learned during all this journey. As a result, this challenge leaves a curated set of educational resources openly available to anyone interested in the topic.

scholarly journals Solutions for Unexpected Challenges Encountered when Integrating Research Genomics Results into the EHR

ACI Open ◽  
2020 ◽  
Vol 04 (02) ◽  
pp. e132-e135
Author(s):  
Luke V. Rasmussen ◽  
Christin Hoell ◽  
Maureen E. Smith ◽  
Rex Chisholm ◽  
Justin Starren ◽  
...  
Keyword(s):  
Genetic Research ◽  
Lessons Learned ◽  
Return Of Results ◽  
Patient Portal ◽  
Test Results ◽  
Research Results ◽  
Genetic Test Results ◽  
Future Return ◽  
New Research ◽  
Genetic Results

Abstract Background While there have been published reports detailing technical challenges of incorporating genetic test results into the electronic health record (EHR) with proposed solutions, less has been published about unanticipated sociotechnological or practical communication challenges involved in this process. Objectives This study was aimed to describe unanticipated issues that arose returning genetic research results through the EHR as part of the National Human Genome Research Institute (NHGRI)-funded electronic Medical Records and Genomics (eMERGE) 3 consortium, and provide lessons learned for future implementations Methods We sequenced 3,000 participants on a 109-gene panel and returned genetic results initially in person and/or by letter, with a later release directly into the EHR and patient portal. Results When results were returned through the EHR, multiple participants expressed confusion and contacted the health system, resulting in our institution temporarily freezing our return of research results. Discussion We determined the likely causes of this issue to be (1) the delay between enrollment and results return, (2) inability to personalize mass e-mail messages announcing new research test results in the EHR, (3) limited space for description of test results in the EHR, and (4) the requirement to list an ordering physician for research results in the EHR. For future return of results, we propose sending preparatory e-mails to participants, including screenshots of how they can expect to see their results presented in the EHR portal. Conclusion We hope our lessons learned can provide helpful guidance to other sites implementing research genetic results into the EHR and can encourage EHR developers to incorporate greater flexibility in the future.

scholarly journals Scaling Up Delivery of Biofortified Staple Food Crops Globally: Paths to Nourishing Millions

2021 ◽  
pp. 037957212098250
Author(s):  
Jennifer K. Foley ◽  
Kristina D. Michaux ◽  
Bho Mudyahoto ◽  
Laira Kyazike ◽  
Binu Cherian ◽  
...  
Keyword(s):  
Pearl Millet ◽  
Large Scale ◽  
Scale Up ◽  
Lessons Learned ◽  
Raw Material ◽  
Micronutrient Deficiencies ◽  
Seed Systems ◽  
Public And Private ◽  
Context Specific ◽  
Public And Private Sector

Background: Micronutrient deficiencies affect over one quarter of the world’s population. Biofortification is an evidence-based nutrition strategy that addresses some of the most common and preventable global micronutrient gaps and can help improve the health of millions of people. Since 2013, HarvestPlus and a consortium of collaborators have made impressive progress in the enrichment of staple crops with essential micronutrients through conventional plant breeding. Objective: To review and highlight lessons learned from multiple large-scale delivery strategies used by HarvestPlus to scale up biofortification across different country and crop contexts. Results: India has strong public and private sector pearl millet breeding programs and a robust commercial seed sector. To scale-up pearl millet, HarvestPlus established partnerships with public and private seed companies, which facilitated the rapid commercialization of products and engagement of farmers in delivery activities. In Nigeria, HarvestPlus stimulated the initial acceptance and popularization of vitamin A cassava using a host of creative approaches, including “crowding in” delivery partners, innovative promotional programs, and development of intermediate raw material for industry and novel food products. In Uganda, orange sweet potato (OSP) is a traditional subsistence crop. Due to this, and the lack of formal seed systems and markets, HarvestPlus established a network of partnerships with community-based nongovernmental organizations and vine multipliers to popularize and scale-up delivery of OSP. Conclusions: Impact of biofortification ultimately depends on the development of sustainable markets for biofortified seeds and products. Results illustrate the need for context-specific, innovative solutions to promote widespread adoption.

scholarly journals Challenges and opportunities for ovarian cancer management in the epidemic of Covid-19: lessons learned from Wuhan, China

2021 ◽  
Vol 14 (1) ◽  
Author(s):  
Zhilan Chen ◽  
Chun Zhang ◽  
Jiu Yin ◽  
Xin Xin ◽  
Hemei Li ◽  
...  
Keyword(s):  
Ovarian Cancer ◽  
Large Scale ◽  
Treatment Plan ◽  
Clinical Care ◽  
Gynecologic Cancer ◽  
Treatment Phase ◽  
Tumor Stage ◽  
Current Treatment ◽  
Lessons Learned ◽  
Cancer Management

AbstractChina and the rest of the world are experiencing an outbreak of the 2019 novel coronavirus disease (COVID-19). Patients with cancer are more susceptible to viral infection and are more likely to develop severe complications, as compared to healthy individuals. The growing spread of COVID-19 presents challenges for the clinical care of patients with gynecological malignancies. Ovarian debulking surgery combined with the frequent need for chemotherapy is most likely why ovarian cancer was rated as the gynecologic cancer most affected by COVID-19. Therefore, ovarian cancer presents a particular challenging task. Concerning the ovarian cancer studies with confirmed COVID-19 reported from large-scale general hospitals in Wuhan, we hold that the treatment plan was adjusted appropriately and an individualized remedy was implemented. The recommendations discussed here were developed mainly based on the experience from Wuhan. We advise that the management strategy for ovarian cancer patients should be adjusted in the light of the local epidemic situation and formulated according to the pathological type, tumor stage and the current treatment phase. Online medical service is an effective and convenient communication platform during the pandemic.

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