23andMe
https://www.23andme.com/en-int/
This direct-to-consumer genetic testing company was founded in 2006. Now it has more than 3 million customers and over 5 million genetic results stored in its databases. Users of this service buy a test kit, then place their tissue sample in a collector and send it back to the lab. Several weeks later, they receive their genetic results online through their 23andMe account portal. Customers have the option to receive health analysis results and/or ancestry results. 23andMe has partnerships with biomedical R&D institutions to study the relationships between DNA and some health conditions. In 2012, 23andMe acquired the crowdsourced patient advocacy startup “CureTogether.” Over 80% of their clients give explicit consent for 23andMe to use their data in this way. It now has ongoing projects in Parkinson’s disease, inflammatory bowel disease, lupus, fertility and major depressive disorders.175
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Lupus
https://www.23andme.com/lupus/
23andMe has collaborated with pharmaceutical company Pfizer and the Lupus Research Institute to study lupus and DNA. This study aimed to recruit 5000 American eligible lupus patients, and the goal was achieved in 17 months.71. Participants could either be an existing client of 23andMe, or other lupus patients who would be provided with a free 23andMe genetic test. Participants also needed to complete regular questionnaires and submit their medical history and physician contacts details to the research team.
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CitSciBio
https://citscibio.org/
Citscibio—The Biomedical Citizen Science Hub is sponsored by the Division of Cancer Biology and the Division of Cancer Control and Population Sciences at the National Cancer Institute, at the National Institutes of Health, USA. Launched in 2016, it is an open platform for the general public to find and add relevant resources, projects, and events. According the website, volunteer coordinators have started over 700 projects that have contributed nearly 1 million measurements for analysis to answer local, regional and/or global questions. Citizen science programs provided by Citscibio are devolved from the platform itself; the platform provides only brief descriptions and web links. Citscibio also collaborates with the citizen science data management working group of the DataONE (Data Observation Networked Earth) program (https://www.dataone.org/) to facilitate data sharing and stewardship.33
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Mark2Cure
https://mark2cure.org/
This project was designed by Dr Ginger Tsueng at the Su Lab at The Scripps Research Institute in California. Anyone who can read English can help research, annotate, and extract crucial information from the biomedical literature of the online biomedical database PubMed. Currently, Mark2Cure studies focus on rare disease conditions, that is, N-glycanase 1 deficiency. Volunteers do a tutorial to understand the interface and the tasks, then mark up the literature on how this disease relates with other conditions or treatments. Volunteers contributed over one million annotations by 2018.98
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PatientsLikeMe
https://www.patientslikeme.com/
This online community for patients to exchange information is a private enterprise founded by lay people (Jamie Heywood, Ben Heywood, and Jeff Cole) in 2004. It launched its first online community in 2006 initially to enable Amyotrophic Lateral Sclerosis (ALS) patients to pool information. The philosophy of PatientsLikeMe is that the more information is shared by patients, the more possible it is to conduct high-impact research. In 2011, the platform expanded to all patients and all health conditions; in 2018, over half a million patients have reported on thousands of conditions, treatments and symptoms.134
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Amyotrophic lateral sclerosis (ALS)
https://www.patientslikeme.com/conditions/als
12 000 ALS patients are registered on this platform to share their experience. Some reported experimenting with lithium carbonate to slow the progression of ALS. Data from 596 patients in all (149 in the treatment group, and 447 in the control group) subsequently underwent two analyses by trained researchers: an intent-to-treat analysis of 149 patients who reported taking lithium for at least 2 months (but may have discontinued taking the drug or died within 12 months), and an analysis of the subset of 78 patients who stayed on lithium for a full 12 months or died within that period.183
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Scistarter
https://scistarter.com/
This is a multidiscipline citizen science platform with over 2700 available citizen science projects and events begun in 2014. Scistarter has collaborations with the US National Science Foundation, Arizona State University's Center for Engagement and Training in Science and Society, NASA, Girl Scouts of America, and others. Volunteers cannot directly access and contribute on the platform but are directed to websites of each separate project. Scistarter lists projects that offer citizen science opportunities, educates the general public about citizen science, helps people to find projects relevant to their location, age and available devices, and records the contributions of citizen scientists.76
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“Tell-us!”
https://scistarter.com/project/19871-Tell-us-about-injuries
This research project is supported by the Ludwig Boltzmann Gesellschaft (Society) of Austria. A crowdsourcing program invites patients to share their experiences with healthcare experts, to help the latter to set research priorities. The first “Tell-us!” study, focusing on mental health issues, launched in 2015 and finished in 2016. The second study, underway in 2018, brings together traumatologists and people who have experiences of injury.189
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Zooniverse
https://www.zooniverse.org/
This was established and is hosted by a group of professional scientists from Oxford University (UK), the Adler Planetarium in Chicago (USA), and other academic institutions. The first project launched in 2007, was Galaxy Zoo; volunteers are still working now to distinguish images of distant galaxies. It claims to be the world’s largest people-powered research platform for volunteers and professionals to work together on scientific studies. In 2018, 88 projects from 11 disciplines are available on the platform. Researchers interested in using the platform are supported by the Zooniverse team in developing a pilot that is beta-tested for ease of use, task suitability, and functionality prior to full release to public citizen scientists.101
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Bash the bug https://www.zooniverse.org/projects/mrniaboc/bash-the-bug Dr Philip W Fowler, in the Modernising Medical Microbiology Group at Oxford University, is the lead researcher. To date over 8000 volunteers have classified images of samples of tuberculosis (TB) surviving in different dosages of antibiotics. The target is to have every image classified by at least 15 volunteers. The project is part of a global project, the Comprehensive Predictive Resistance for Tuberculosis International Consortium (CRyPTIC), which aims to achieve better, faster and more targeted treatment of multidrug-resistant TB via genetic resistance prediction.
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