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
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
As of September 2015, 2585 people have joined iConquerMS™. The following graphics show selected characteristics of our membership.
iConquerMS™ data: Each registered iConquerMS™ participant is asked to complete a series of core Web-based questionnaires on the iConquerMS.org portal. These are completed at enrolment to provide baseline data and will be completed at twice-yearly intervals to provide longitudinal updates. The current core questionnaires include:
- iConquerMS™ MS History
- iConquerMS™ Demographics
- Neuro-QOL short form
- PROMIS Global Health Questionnaire
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. 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. These EHRs are available to investigators for use in research studies. We may also be able to facilitate access to EHRs from PCORnet member clinical organizations (see “PCORnet data” below).
PCORnet data: Through our status as a PCORnet Patient-Powered Research Network, iConquerMS™ staff are able to propose queries of the data provided by all PCORnet members into the Common Data Model . We are also able to reach out to other PCORnet networks, many of which have data from and about people with MS or focus on symptoms or comorbidities common in MS, to propose research projects involving joint data or sample collection and/or analysis. Data that may be available from PCORnet member networks include EHRs from clinical care providers, patient-reported data from disease registries, and more.
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 core questionnaires and EHRs that have been uploaded by participants, can be readily shared with researchers. We plan to begin a pilot saliva sample collection project soon and the extracted DNA will also be available to researchers. In the future, as we engage in additional research studies, any data as well as any leftover banked biosamples collected specifically for those studies will also be available to other researchers for use in their studies. 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.
Studies involving PCORnet data: We can facilitate MS-related studies requiring access to data contained within the PCORnet Common Data Model or collaboration with other PCORnet member networks.
Collaborative studies with other studies and cohorts: 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. 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 post a notice in the discussion forum section of our registered members portal.
- 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.
Please contact us if we can be of help in one of these ways or any other way.