More than 6,500 rare diseases exists at this time and less than 5 percent have a treatment. In the United States a rare disease is one that affects less than 200,000 people. However, roughly 25 to 30 million Americans are affected by a rare disease. Many of these diseases:
- May involve chronic illness, disability, and often premature death
- Often have no treatment or not very effective treatment
- Are frequently not diagnosed correctly
- Are often very complex
- Are often caused by changes in genes
The theme for this year’s Rare Disease Day is “Research” with the slogan, “With research, possibilities are limitless”. Research is key to find treatments and possible cures as well as improving the care of those with a rare disease. The philosophy of NIH’s National Center for Advancing Translational Science (NCATS) is to work closely with families, caregivers, advocates and patients in order to make greater advancements in rare disease research. February 28 is a time to recognize the advancements being made, bring awareness, share personal stories, and encourage dialogue among researchers, advocates, families and others.
Learn more about Rare Disease Day and how you and your organization can get involved at http://www.rarediseaseday.org/
Learn more about rare diseases through a number of websites:
How do data become unloved? We data users don’t love data that are messy, poorly documented, incomplete, or unwieldy, to name just a few frustrations. However, one important way that data become unloved is that they are just plain old. Older data tend not to be machine-readable, which can pretty much be the kiss of death. Digitization, while it’s improving, is still somewhat labor-intensive and costly, and so unless a data set is obviously worth the trouble, it may languish.
However, researchers are starting to explore whether there may be some hidden gems worth rescuing. One area in which this is happening is climate data, and a great example is the Glacier Photograph Collection from the National Snow and Ice Data Center (NSIDC). Before this collection was digitized, users had to travel to the NSIDC in Colorado, ask staff to find physical images or microfilm for them in the collection, and then deal with those physical artefacts. Not surprisingly, the collection had few users. However, digitizing these photographs (which can be considered data sources, as they contain information that can be analyzed) has made them not only accessible, but an important resource for documenting changes in glacier size and coverage. Digitizing some of the old photographs also suggests locations for repeat photographs from the same vantage point, which can indicate changes across time periods.
PHOTO: Left: William O. Field, 1941; Right: Bruce F. Molnia, 2004. Muir Glacier: From the Glacier Photograph Collection. Boulder, Colorado USA: National Snow and Ice Data Center. Digital media.
But, using the above example is cheating a little bit; these photographs were unloved because they were undigitized, but it was clear that they were worth digitizing. In fact, it was so clear that NSIDC was able to get funding and enter into partnerships to get that work done. So, what if a researcher has a great idea, but needs sheer person-power to bring it to fruition? These days, crowd-sourcing may do the trick! Check out the Swiss project Data Rescue @ Home, in which citizen-volunteers are entering German climate data collected during WWII, and also have completed entering data from a weather station in the Solomon Islands collected in the early to mid-1900s. By January 2014, they reported having digitized 1.3 million values! They note: “The old data are expected to be very useful for different international research and reanalysis projects…[for example,] historical weather data from the Azores Islands are particularly valuable since the islands are located at the southern node of the most important climatic variability mode in the North Atlantic-European region, the so-called North Atlantic Oscillation (NAO), and there are not much other historical data available from the larger region.”
PHOTO: Example of data collected in the Solomon Islands, entered electronically by citizen-volunteers of the Data Rescue @ Home project (Accessed 2-13-17).
Interested in getting involved in a citizen-science project yourself? Here’s a list of possibilities! And, if you really get hooked, you may want to dive into some collections of older non-digitized data and consider starting your own project, to rescue the unloved data and give them new life.
OK, I’m off now to figure out how to get on the project where I can hang out on the beach in New Jersey and count horseshoe crabs!
The theme for Day 4 of “Love Your Data Week” is “Finding the Right Data”. There’s a lot of open national health data out there– Data.gov’s health portal, and the “Data and Tools” tab on the main page of the National Center for Health Statistics are good sources (also this list of open access data repositories has a good section on medicine).
But, any open data on the internet can be vulnerable if there isn’t a commitment to preserve it or if organizational priorities change, and government data are no exception. Enter DataLumos! This service, launched (not coincidentally) during “Love Your Data Week”, aims to preserve government data by archiving it into the future. The data will be gathered and maintained by ICPSR, the respected data center at the University of Michigan. Want to hear more? There’s a webinar about it tomorrow! You can register here.
Also, check out the wider work of DataRefuge and Data Rescue projects springing up across the United States (in fact, the University of Washington is hosting a Data Rescue event next weekend). We may not know yet why a data set could be important to preserve for the future, but careful and committed archiving at least will give future data scientists and seekers the option to use it.
And, it’s also no coincidence that the creators of the archive are using the term Lumos; it is the spell, in the Harry Potter series by J.K. Rowling, that turns a wand into a flashlight. The idea is that they are working to keep data sets well-lit by keeping them open. In future, there will be these and many other open data sets to choose from, to advance research and data science!
Welcome to day three of Love Your Data Week 2017! Today’s topic is Good Data Examples. What makes data “good” or “well managed?” The Fair Data Principles: Findability, Accessibility, Interoperability, and Reusability are a good place to start. Published by Mark Wilkinson and his colleagues in 2016, these principles “put specific emphasis on enhancing the ability of machines to automatically find and use the data, in addition to supporting its reuse by individuals.” 1A brief description of the principles, excerpted from Wilkinson’s article, explains:
To be Findable:
- F1. (meta)data are assigned a globally unique and persistent identifier
- F2. data are described with rich metadata (defined by R1 below)
- F3. metadata clearly and explicitly include the identifier of the data it describes
- F4. (meta)data are registered or indexed in a searchable resource
Read more »
Welcome to Love Your Data Week 2017! This “5-day international event to help researchers take better care of their data” has participants from all over the United States and also abroad, with everyone posting and tweeting about data (best practices, resources, etc.). The PNR will be posting on our Facebook and Twitter pages, as well as here on the Dragonfly blog, about data issues and trends you may want to know about, whether or not you work directly with researchers.
Today’s topic is “Documenting, Describing and Defining Data” and we are pleased to re-post a behind-the-scenes look at how researchers define data quality, from the University of Washington Libraries’ Data Services “Data@Libs” blog. Enjoy!
“Today we’re highlighting the work of a University of Washington research lab, to demonstrate how one group of researchers define data quality.
Loma, Kaeli, and Jorge from the Avian Conservation Laboratory in the UW’s School of Environmental and Forest Sciences kindly agreed to answer a few questions about data quality in their field of research. Let us know your experiences with data quality by tweeting with the hashtag #LYD17 to @UWLibsData.
Provide a brief introduction to yourself and your lab/team:
Kaeli: “I study the behavior of crows around dead crows (ethology/thanatology). Most other people in my lab also work on birds, but our individual studies, areas of research and methodologies vary greatly.”
Read more »
We apologize, but this webinar session is cancelled due to unforeseen circumstances for speaker.
When: Wednesday February 15, 1:00pm PT, Noon Alaska Time, 2:00pm Mountain Time
Session Title: “Library, Family, Primary Care and Community Collaboration for Young Children”
Learn how to join the webinar at https://nnlm.gov/classes/pnr-rendezvous
Join us for the next PNR Rendezvous webinar session where Kate Orville who is the Co-director of the Washington State Medical Home Partnerships Project for Children and Youth with Special Health Care Needs (MHPP) housed at the University of Washington’s Center on Human Development and Disability.
Learn how primary health care providers and clinics are changing to become “patient-centered medical homes” and the opportunities this opens up for libraries, public health, early learning and other community partners to become part of the bigger “medical home neighborhood.” Libraries support children’s healthy development through typical story-time offerings but also by collaborating with local initiatives to promote developmental milestones awareness, health and developmental screenings, and connecting parents with reliable health information and linkages with community services. Using examples from Washington State and nationally, the presenter will share resources and strategies available to libraries anywhere to improve the health and well-being of young children and families in your community. Resources you can access will include, the CDC’s Learn the Signs, Act Early; Birth to Five: Watch Me Thrive; and Reach Out and Read and its 5,500 medical clinics encouraging early literacy. Find out where to refer families locally with a variety of concerns. Bring your questions and experience to share!