How we can assist your research
We can assist your research efforts in a number of ways:
- Provide access to our database of information previously collected from iConquerMS participants
- Collect new data from iConquerMS participants, either through the iConquerMS.org web portal or other mechanisms, on a cross-sectional or longitudinal basis
- Provide you with biosamples from iConquerMS participants
- Help find participants for your non-iConquerMS studies or other research activities
- Conduct surveys of iConquerMS participants to help you understand the community’s needs and interests to enhance the impact and feasibility of your research
- Plan and conduct focus groups, advisory boards, and councils to provide insight and guidance on patient-centric topics and activities
- Connect you with diverse perspectives through the RIDE (Research Inclusion, Diversity and Equity) Council
- Support studies involving the collection and integration of both clinical and patient-reported data
Please read further to learn more about our research resources, policies and procedures, and more. We invite you to contact us at any time for more information
iConquerMS data: Each registered iConquerMS participant is invited to participate in the REAL MS study, consisting of a set of core Web-based questionnaires hosted on the iConquerMS.org portal. These are completed at enrollment to provide baseline data and offered again at twice-yearly intervals to provide longitudinal updates. The current REAL MS questionnaires include:
- iConquerMS MS History
- iConquerMS Demographics
- Neuro-QOL short form
- PROMIS Global Health Questionnaire
- Diet and Wellness questionnaire
- Physical Activity questionnaire
- Other Conditions questionnaire
- Patient-Determined Disease Steps (PDDS)
We can implement additional Web questionnaires as needed to meet the needs of your research study. These can be presented to iConquerMS participants as a cross-sectional survey or on a longitudinal basis.
In addition, we have the ability to develop mobile phone apps or integrate data from existing apps. We can also integrate data collected by fitness trackers such as Fitbit®-type products or other personal data collection devices.
iConquerMS biosamples: If your study needs samples that can be collected by the participant directly, such as saliva, cheek cells, skin swabs, urine, or fecal samples, we can mail home-based collection kits to iConquerMS participants along with return shipping labels and supplies. The collected samples can be sent directly to your lab or to an external lab for processing.
For samples such as blood which need to be collected by trained personnel, we would be happy to discuss and explore options with you. We are currently conducting a blood sample collection in partnership with Quest Diagnostics for the COVER-MS Immune Response Substudy. Accelerated Cure Project has 10 years of experience in clinic-based sample collection through the establishment and operation of our 3,200-subject MS blood sample repository.
iConquerMS electronic health records: iConquerMS participants are invited to upload any EHRs they may have received from any of their healthcare providers. Supported file formats include PDF and XML.
Support for clinical trials and studies: The IConquerMS platform offers a number of features developed to support clinical trials, including reporting, randomization, automated reminders, and role-based permissions. The platform also supports the collection and seamless integration of clinical and patient-reported outcomes data. The STEP for MS trial of in-person vs telerehab exercise training is using the iConquerMS platform for data management and study support.
iConquerMS can support many different types of studies depending on the nature and goals of your research program.
Studies using existing data/biosamples: Data previously collected from iConquerMS participants, such as data from the REAL MS study and EHRs that have been uploaded by participants, can be readily shared with researchers. The extracted DNA from a pilot collection of saliva samples is also available to researchers. Our consent processes governing the collection of data and biosamples from iConquerMS participants permit open sharing of these resources with any researcher without the need for additional consent.
Studies involving collection of new data/samples: If your research requires access to data and/or biosamples that have not already been collected, we will be happy to work with you to obtain these resources. We can implement new data collection mechanisms through the iConquerMS platform and/or arrange for collection of biosamples from participants. Data and samples can be collected either from the entire iConquerMS cohort or from specific subgroups, depending on your needs. For some studies, such as those involving the deployment of a new questionnaire on the iConquerMS.org portal, no additional consent will be needed. If an additional consent is needed for activities not covered by our main consent, we will work with you to put this in place.
Focus groups and patient councils: We can convene and facilitate focus groups and patient councils to gather perspectives and insights on a wide variety of topics. Whether you’re looking for a one-time conversation or a longer-term engagement, the diversity of our community, including both demographics and disease characteristics, allows us to recruit individuals matching your target audience.
Collaborative studies: We welcome collaborations with studies using other research networks or cohorts, other data collection platforms, and/or other research resources that already exist or are in development. We can also support multi-site clinical studies through the IConquerMS data collection and study management platform. If iConquerMS can enhance the statistical power of your study, provide access to new patient populations, supply valuable patient input to your efforts, and/or provide other types of support, we would be delighted to talk with you.
In addition to developing an iConquerMS research study with you, we can support your research efforts in other ways:
- Subject recruitment: If you are recruiting subjects for an existing study, we would be happy to send a targeted email to participants meeting your eligibility criteria, or post a notice in our newsletter to reach our entire community.
- Community feedback: In addition to soliciting input from our community on individual research studies, we can also survey our members for other purposes. For instance, we have surveyed our members to understand how they rate the importance of research into mood disorders, and to test the feasibility of a study design involving online interventions.
- Volunteer recruitment: If you have a research-related activity that would benefit from direct involvement from people with MS, we can help identify willing and interested individuals to participate. For example, we can help identify people with MS to serve on advisory panels for research studies or programs.
- Facilitating diversity, equity, and inclusion initiatives: iConquerMS hosts multiple diversity, equity, and inclusion-focused initiatives geared towards making MS research participation more representative and equitable. Our Research Inclusion, Diversity, and Equity (RIDE) Council brings together people with MS from a variety of backgrounds who can advise you on approaches to diversify your research and other initiatives. Learn more about how the RIDE Council can support your research efforts.
Please contact us if we can be of help in one of these ways or any other way.