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
- Diet and Wellness questionnaire
- Physical Activity questionnaire
- Other Conditions 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.