Julie Cunningham, board member & advocate, and Dr Hal Hoffman MD, medical advisor showing off the chart at our 2014 Autoinflammatory Picnic in Southern CA. Photo credit Maria Quintos
UPDATE: The Autoinflammatory Search online database is now live! Click here to see it.
Our Comparative Chart of Autoinflammatory Diseases has been available in print and online for a year, and has become a leading reference and educational tool for these diseases in the world. We had no idea how popular it would be, but this is good news for awareness! The chart has already helped a number of patients get diagnosed, and onto beneficial treatment. You may have even seen it featured in this recent video about a newly classified autoinflammatory disease, NLRC4-MAS on The National, a major Canadian news show.
Medical professionals like that this expanded comprehensive wall chart has easy to compare information and resources for each disease on it, as prior to the release of the chart, there was no other place to do an easy comparison of all these diseases.
Doctors are using this large chart to not only learn about these diseases, but many have told us that they have studied it for their rheumatology board exams, and have used it to teach other doctors about autoinflammatory diseases. We have handed out thousands of copies at rheumatology conferences worldwide, and have shipped hundreds out by mail to doctors and other medical professionals, in addition to having the chart downloaded online thousands of times. If you are wondering how to use it yourself, please read this blog post.
What’s next? The Autoinflammatory Disease Web Application!
With our first debut of the comparative chart at the Autoinflammation 2013 Congress during the abstract and poster presentation session, we were encouraged by leading researchers and experts on autoinlflammatory diseases to take the information and comparative nature of the chart to the next level in a multilingual, digital, interactive and online system.
This is a project that is meant to bring many interested parties from all aspects of these diseases together. Many experts have been asking for us to work on this, and have volunteered to help over the past year, and we are looking forward to working with them on this project to meet the needs of medical professionals, researchers, caregivers and patients.
Why is this needed?
It is not going to be “just another website” but a tool that will transcend our current chart, yet it will still have the ease of use and comparative nature built into a system that will be more functional for digital and mobile uses. The complexity of the web application creation and programming of the search capacities, plus the amount of data to input into this in multiple languages is a monumental task. But it is possible, and we have assembled a team that will bring this project to pass over the next few months.
This web application will be free and accessible to all online. We are going to collaborate with medical societies, and research centers worldwide on this project to have it linked to not only our organization website, but to all interested and relevant medical societies, clinical centers and other resources.
We have found that most of the current information on these diseases resides in medical journals that are not freely accessible to the general public. Compiling new information and insights on these diseases, with cited references and links in many languages will help to bridge this informational divide.
Having the web application in a number of languages will help to overcome the lack of information about these diseases in certain parts of the world, which will have a great impact on improving understanding, diagnosis and treatment. We also hope to develop more patient materials, and also guidelines and resources for medical professionals to use to promote best practices and standards of care and treatment for autoinflammatory diseases.
In addition, we will also have links to all the latest research, clinical trials, genetic testing labs and other helpful information for each disease, and helpful materials for patients all in one site online. We are working with experts on autoinflammatory diseases, and innovative designers and digital specialists to make this into a very easy to use, helpful tool that can be linked and collaborated on with various doctors, medical centers and medical societies worldwide to make this the “hub for all things autoinflammatory.”
Customized search options will be a key component of the web application
Some ideas that we are working on is how to best show groupings of these diseases, their connections and contrasts. We are also working on a set of search options to facilitate easy head-to-head comparison between the diseases by symptoms, labs, other clinical findings.
Doctors are clamoring for information on these diseases, in an up to date, easy to use format that will be a “one stop shop” to find all the needed resources, and use as a tool to learn, educate, and help to diagnose patients and fellow doctors about these diseases.
There will be a search option of the main mechanism(s)that cause or mediate the diseases. Or you can compare diseases by the affected protein, gene or chromosome region, so doctors that may be doing new research or even whole exome sequencing that find mutations in certain regions in the DNA can use this information to find out more about diseases that may be associated with certain mutations.
In addition, we will have the images that we have on our chart, but we can have additional photos to show more findings for each disease. We will also feature links to various medications, and research that discusses experimental care and treatment for these diseases, or direct links for government-approved medications for some of these diseases.
Our present chart will also be refined and expanded and will still be in print as well as a pdf about these diseases. But we have at least four more diseases to add to it, so it is getting to be enormous in print, and as a pdf! We will likely have to make the chart into two rows of comparative content.
Funding and support
We are pleased to announce that we recently received an unconditional grant from Swedish Orphan Biovitrum AB (Sobi) of $40,000 that is being used to support the development of this web application, and we cannot thank them enough! Sobi is a leader in rare disease treatments, and has seen the need and potential for this web application that will help spread more awareness for autoinflammatory diseases, and aid in the diagnosis of patients.
More awareness and focus on autoinflammatory diseases will also lead to more interest for research for these conditions as well. This generous grant from Sobi will help this project to become a reality much sooner than anticipated, which is amazing! Truly, we are so thankful and deeply touched by their support for this project, and also to our donors from the patient community, the general public and industry that are helping us on many levels.
Currently, we are seeking additional funding from a number of other sources to also help with the project, and to help this effort to grow and be sustained for many years. We are filing for a few grants and will announce other support as soon as it is available.
Please contact us or email directly to karen@autoinflammatory.org if you have an interest in helping to give us insights on what you would like to see with this web app, if you want to support the project in any way from translation, content development, collaborative efforts or grant funding.
The initial costs to develop this web application are higher than many other projects that we have done, but it will have the largest impact for years to come, and will not require lots of funding to sustain over time. These funds will be focused on this process, and we are also relying on volunteer medical professionals and experts to help with this project as well, which will help to preserve resources for this project. The majority of the cost for this project is going towards programming, development, and data management.
What matters most
The purpose of all our awareness efforts is our strong belief that free access to helpful information and educational materials can help to aid in earlier, and more accurate diagnosis that can lead to better care and treatment for patients that can greatly improve their life and health.
Our Inspiration
Our patients, their families and the doctors and researchers caring for autoinflammatory diseases are our greatest motivation for this project, and they are asking for us to take this to another level.
We have heard from a number of patients in the past year that have directly benefited from having our materials and resources available to their doctors, or themselves online. They email or share their experiences in our private online patient communities, and many have started helpful treatments that have greatly improved their health, and quality of life.This is what motivates us, and why this project matters.
There are likely many undiagnosed patients suffering in the world with these diseases right now, and diagnosis is the first step to getting them help. In addition, we do help to refer patients to clinical trials, and centers that can help them as needed, and we have had a surge of requests over the past year, thanks in part to our comparative chart and other materials in print, and online.
There is nothing else out there like this! (Which is intimidating, but ripe with potential)
Currently, there is no other unified source to find all the information about systemic autoinflammatory diseases, with a database of symptoms that can be searched and compared head to head or my symptoms with links to numerous references, genetic testing laboratories, clinical trials, and treatment options, in addition to content for patients to use that is in many languages. There are a number of resources online, including our website (that features the chart and detailed content for a number of these diseases) but the number of diseases that are now autoinflammatory has expanded greatly, so we will be updating our website as well over the next year as well.
Surprisingly, there are very few interactive scientific charts and sites that we have found so far that come close to what is being developed with this project. But, after the many hours that went into making our first comparative chart I realized quickly why nobody had ever made such a chart of all the known systemic autoinflammatory diseases before us! It is a lot of work, and a labor of love!
At the time I was developing the chart content and references for the experts to edit, I was doing a lot of the work on my laptop, at the bedside of my child that was in the hospital with complications with his autoinflammatory disease, in between my part time work as an RN at another hospital and running our org. That month was a bit of a blur, since we were also in the middle of a move, but we made it all work. He is my inspiration, in addition to all the other patients, and our hope is that more people can be helped from our efforts. I never imagined that chart would have this big of an impact, but we are very pleased that it has so far led to more diagnosis, and understanding of these diseases. This next phase will be even more work, but has even more potential to help even more people. Someday, I will get back to doing photo albums, crafts, sewing cross stitch and other projects in my “spare time” but this is what needs to happen now!
Our comparative chart has been nicknamed the “periodic table of autoinflammatory diseases” so I started to look for a digital version of the periodic table of the elements. This dynamic periodic table of the elements has an interactive, multi-layered digital chart format that was inspiring to me, and I truly appreciate the effort that was put into it! But we quickly realized that we needed to take this in a different direction, and away from a literal chart format.
We started to consult digital designers and programmers on this project, to get an estimate of costs and what was possible, and found that there is really very little so far using technology in the way that we have envisioned. So, this will not only be an essential resource for doctors and patients, but may also be an innovation for how to deal with comparing diseases and curating resources. This potential to not only solve a need for autoinflammatory diseases, but to also help innovate medical information and how it is delivered to people has captured the interest of a number of experts.
Some good examples of existing searchable medical sites that have some content for a few of these diseases are immunology: immunodeficiency search and findzebra. These are very good, but unfortunately, you cannot click on words in the main copy to “go deeper” into the content, or go to helpful medical journals clinical trials, patient resources or a number of other things. In addition, we found that only a few autoinflammatory diseases are represented on these search tools, and on findzebra, the sources of content that the search engine found on the internet for some of these diseases had not been updated in over 10 years. So much has been discovered in that time period that there is a great need for more up to date, focused information and resources.
Hopefully our web application will launch in mid 2015, and we hope that our efforts and the capacity of modern technology can help us to achieve what we are trying to do with this new project. It will be a work in progress for years to come, and we are so thankful for the support of our donors, grantors, and medical experts that believe in this project. We would not be able to even consider this without them. Thank you!
