MS Research and the Power of Health Data Expand All
The iConquerMS™ initiative enables the collection of extremely large amounts of information required for research, and research is essential for answering key questions about MS. Unlike other data-gathering projects, iConquerMS™ is driven by individuals with MS, and is informed by their input and ideas. iConquerMS™ is also important because it is among the first examples of a ‘large-scale approach’ to research, an approach many believe is essential to tackle the complexities of disease effectively.
iConquerMS™ will only succeed if thousands of people living with MS participate. It is centered around those living with the disease and depends on their participation. You will not be excluded based on what kind of MS you have, your level of disability, or what other conditions you may have. In addition, iConquerMS™ relies on those with MS not only to contribute their health information, but to provide their ideas for research topics and questions to move research in directions that are important to them. That means that as a participant, you'll have the power to influence what types of research are conducted through iConquerMS™. The bridge between researchers and those with the disease is a key feature and benefit of participation.
The more information you can contribute about your MS experience the better!
Also, the iConquerMS™ initiative will evolve as research advances. Our research questionnaires will vary in the future: some will be short because only a few answers are needed; others will be more comprehensive, as needed for research. Your continued commitment to providing information is essential. In turn, we commit to keeping you up to date on how iConquerMS™ is contributing to research.
In order to address a wide range of research questions, we need thousands to tens of thousand of people affected by MS as participants. We also welcome participants who are not affected by MS for comparison purposes. Because MS is so varied, it’s also important to include diverse individual experiences.
One person can ask an important research question, but information from thousands of individuals may be needed to answer that question. An example of that can be found in heart disease, where important healthcare advances have been made through the analysis of data from thousands of people.
There are many questions that may be answered through the use of health information from iConquerMS™. For example:
- What causes MS, and is MS actually more than one disease?
- What factors affect disease activity in MS?
- Which MS treatments work best in which people?
- How helpful are things like diet and exercise in reducing the effects of MS?
- Can MS be prevented?
- Is it possible to predict someone's future experience with MS based on a person's past experience of MS or the experiences of others?
Data Collection Expand All
From time to time, there will be new surveys for you to complete on the site; you'll be notified when these are ready. In the near future, you'll be asked to provide health status updates to iConquerMS™ whenever certain events happen, such as a relapse or a change in treatment.
In addition to returning to update your health information, please visit as often as you'd like. You will be able to read updates about the initiative, see summaries about the pooled data from all participants in iConquerMS™, and learn about the research that is underway. We always welcome your feedback and ideas.
You will be asked to contribute information about your MS history, symptoms, and treatments. In addition, you’ll be asked about your general health and health history; your gender and other demographic information; family history; nutrition; lifestyle; and exposure to environmental factors. You will also be asked to obtain and contribute your Electronic Health Records (EHRs), also known as Electronic Medical Records (EMRs).
Yes, the health information you contribute to iConquerMS™ will be shared in a de-identified manner to enable research. Qualified researchers will be invited to request health information from iConquerMS™ for the purpose of conducting research studies. The iConquerMS™ Research Committee will oversee the approval process for these requests. In other cases, qualified researchers will be asked to use iConquerMS™ health information to conduct research studies that arise from questions submitted by iConquerMS™ participants. This process will also be overseen by the iConquerMS™ Research Committee.
In addition, statistics and summary information based on all of the participants' health information pooled together will be shared with iConquerMS™ participants and others to show, for example, what types of people are participating and how the participant base is growing over time.
We want to make sure that you clearly understand how and why the study is being conducted, as well as the ways you will be asked to participate and any risks or benefits there are in doing so.
This informed consent statement, along with other iConquerMS™ materials, has been reviewed and approved by an Institutional Review Board.
Absolutely! iConquerMS™ and NARCOMS are separate efforts and there's no restriction to participating in both.
iConquerMS™ is different in several ways from other MS data-collection efforts, such as PatientsLikeMe and NARCOMS. First, it is a nonprofit endeavor governed by people affected by MS and includes their voice every step of the way. Second, it is centered on research driven by people affected by MS on topics of interest to them. iConquerMS is connected to other people-powered research networks and clinical networks through its strong relationship with the Patient Centered Outcomes Research Institute (PCORI). This gives us the power to easily contribute our data to many research efforts and gives MS researchers access to data from millions of people across the country. While other efforts share some of these qualities, iConquerMS™ is the only MS research initiative that is nonprofit, people-centered and governed, and part of a nationwide research network.
Connection to Research Expand All
Your ideas about research topics that interest you will be shared with the Research Committee. As these ideas are developed into specific research queries, they can be shared with the wider research community.
Please note that this website will not allow researchers to contact you directly without your prior permission.
You should feel free to submit questions and ideas on any topic related to multiple sclerosis.
Your information will be pooled with information from hundreds or even thousands of other people with MS. The pooled information is used by researchers to see patterns that would not otherwise be visible, and to gain insights into the causes and mechanisms of the disease.
iConquerMS™ will provide updates about the research studies and their results as they advance.
Researchers will never contact you directly without your prior permission.
Your Involvement Expand All
People living with MS are involved with every aspect of iConquerMS™, from the governance of the initiative, to ideas for research, to design and content of the website, to communications, and so on. People with MS are the heart and soul of iConquerMS™.
We ask that you continue to share your information by completing surveys on the site. You are free to skip surveys or to withdraw at any time.
Yes, they can. While our primary goal is the collection of information from people living with MS, we welcome information from your family and friends.
You will receive updates from us periodically, for example, when there is a new survey, important news, and/or research findings.
Your medical provider can participate by helping to spread the word about this initiative—please feel free to ask medical providers to contact Accelerated Cure Project for MS at (781) 487-0008.
Your provider may also sign up to contribute information as a participant.
Funding and Other Support Expand All
The funding to establish the iConquerMS People-Powered Research Network and to maintain its infrastructure and operations from early 2014 until the end of March, 2019, was provided by the Patient-Centered Outcomes Research Institute (PCORI), an independent, nonprofit organization authorized by Congress in 2010. In addition to the initial funding from PCORI, the infrastructure, operations and participation of iConquerMS in research projects and innovations has been funded by:
- The National MS Society
- The Italian MS Society
- Support associated with research studies
- Unrestricted grants from medical product companies
MS-PPRN Expand All
The MS Patient-Powered Research Network (MS-PPRN) is a network of organizations and individuals, created and managed by the Accelerated Cure Project for MS, who are participating in patient-powered research into the causes and mechanisms of MS. Funded by the Patient-Centered Outcomes Research Institute (PCORI) to establish PCORnet, the network is supported by an integrated IT and communications platform that allows participants to share data and connect with the research community. The MS-PPRN is a key component of the iConquerMS™ initiative.
PCORnet (the National Patient-Centered Clinical Research Network) is a large, highly representative, national network for conducting clinical outcomes research to improve healthcare. The network’s Coordinating Center will integrate data from 29 PCORI-funded health data network projects, including the MS-PPRN.
EHR Basics Expand All
Electronic health records (EHRs) are records stored on a computer that your healthcare provider uses to record your health status and history. The records may contain a range of information, including your demographic details, diagnoses, treatments, medications, vaccinations, and laboratory test results.
EHRs provide a way for your healthcare providers to track the care you've received over time. EHRs store your health status and medical history in a secure electronic format, making it easier for your whole healthcare team to access the same information. Ideally, this results in more coordinated care, helping to improve your treatment and overall health.
Your EHRs contain important information about your health status and medical history, in particular your MS diagnosis, treatment, and overall experience. This information can be very helpful to researchers, especially when combined with the other data you provide as an iConquerMS member.
On the iConquerMS member dashboard, there is a section with step-by-step instructions for uploading and managing EHRs. You can upload multiple files, and you can also update or delete them later if you wish. Even if you don’t have access to your full medical record, you can upload the records that you do have. There is no limit to the number of files you can upload to iConquerMS.
It’s a good idea to review your files before uploading them, in case there is information you would prefer not to share, or in case the EHR contains mistakes that need to be corrected.
Privacy and Security Expand All
iConquerMS™ takes your privacy very seriously and has policies and processes in place to safeguard your identity and protect your health data. For instance, only a very limited number of authorized personnel at ACP will have access to your contact information, and this information will never be attached to the health information shared with researchers. Before sharing your health information with researchers, all information that identifies you directly will be removed.
In terms of data security, the iConquerMS™ Project Team takes industry-standard physical and electronic technical precautions to protect the information you share with iConquerMS™.
There are risks associated with sharing any health information; view the informed consent statement for more details about the risks of this study. iConquerMS has established policies and processes that are consistent with current standards to minimize these risks and protect your health information.
You will be able to see your information as long as the iConquerMS initiative continues. If for any reason the portal is discontinued, you will be notified in advance.
If the iConquerMS initiative ends, ACP may retain your records but will no longer distribute them to researchers. Any data that had been shared for research cannot be retrieved from the researchers.
If you decide to withdraw from iConquerMS, your online account will be deleted and you will no longer have access to the information you provided. Any information you provided prior to withdrawal may be kept by ACP but not distributed to researchers. Any data that had been shared for research cannot be retrieved from researchers.
How does iConquerMS™ ensure my private information remains secure?
iConquerMS takes your privacy very seriously and has policies and processes in place to safeguard your identity and protect your health data. For instance, only a very limited number of authorized personnel at ACP will have access to your contact information, and this information will never be attached to the health information shared with researchers. Before sharing your health information with researchers, all information that identifies you directly will be removed.
EHRs for Research Expand All
When researchers have access to large amounts of information, they gain new insights into MS, leading to better diagnoses, improved treatments, and one day, to cures. As a result of iConquerMS™, researchers will now have access to unprecedented amounts of data, including the information from the EHRs of people living with MS. Sharing your EHRs will make a difference; every bit of data is an important contribution toward curing MS.
Any data you can share is valuable!
Researchers will use your EHRs in a de-identified manner. Any information that identifies you directly will be removed.
Researchers will use this data to find patterns that might not be visible otherwise. And then they can use these patterns and insights to figure out the causes of MS, determine who will respond best to various therapies, and find new improved treatments for the disease.
Definitely. It is very helpful to update your EHRs on iConquerMS™. You can upload a new file at any time or update your existing EHRs.
EHR Information Expand All
EHRs may contain a range of information, including:
- Providers' names
- Demographic details
- Medical history
- Treatment recommendations
- Vital signs (blood pressure, temperature, pulse, and breathing rate)
- Laboratory test results
- Radiology images
- Administration and billing data
iConquerMS™ welcomes all different types of health records because all this information is potentially valuable to MS research efforts. There is no limit to the number of files you can upload to iConquerMS™.
We know that EHRs may contain mistakes, but we still welcome your information. If you feel that your EHR is grossly inaccurate, it may be best to not upload it until the mistakes are corrected. To get a corrected EHR, you would need to speak to the healthcare provider who gave you the record; he or she would be best able to fix any mistakes.
Providers Expand All
iConquerMS™ encourages you to submit EHRs from as many providers as you have; there is no limit to the number of files you can upload to iConquerMS™.
Federal law requires that your provider share a copy of your medical records upon your request. If that information is kept electronically, you have the right to receive it in electronic or paper form.
Under federal law, providers are not permitted to charge you a fee to search for and retrieve your medical records. However, providers are allowed to charge a fee to cover the cost of furnishing these records to you. In the case of paper records, this can include copying costs. If your provider stores your records electronically, in most cases you can receive your EHRs free of charge.
Unfortunately, iConquerMS™ cannot help cover the cost of obtaining your EHRs. You are responsible for any direct costs associated with getting your EHR files.
Certain providers can send EHRs to iConquerMS™ directly. Please follow the instructions on the request my EHR page to ask providers to transmit your EHRs directly to the iConquerMS™ portal.
However, many providers do not have the ability to securely send EHRs directly to iConquerMS™. If you do not see your provider listed on the request my EHR page, you will need to ask your provider for your EHRs. You will then need to upload the EHRs to the iConquerMS™ portal.
You can upload scanned copies of paper records to the iConquerMS™ portal, so you can store and see all your health records in one location.
A provider can be anyone involved in your healthcare team. This may include your primary care doctor, specialists, nurses, other clinicians, such as physical therapists, dietitians, pharmacists, and lab technicians.