uMed is a clinical study support company who works on behalf of healthcare providers and study sponsors, including Cohort Science. They will be providing the patient contact and engagement services for this study.
How we keep your data safe
uMed aims to provide better access for patients and healthcare providers to participate in clinical research. To do this we process data to help match patients to the most suitable studies.
We put privacy and security first and our priority is to ensure that patients and healthcare providers have full transparency and control over the use of their data.
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HIPAA Compliant
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ISO9001:2015 certified
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ISO27001:2013 certified
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Cyber Essentials certification
Find out more about how uMed processes data in our frequently asked questions below.
Frequently asked questions
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Who is uMed?
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Who is Cohort Science?
Cohort Science develops and manages studies and registries and they are the study sponsor for AccessPD, AccessCMD and AccessILD.
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How will my data be used?
Health data collected from you and your healthcare provider record system will only be used for the research study, and not for any other purpose.
We obtain your consent to use this data when you sign up for the study, and this consent includes allowing the study team to share de-identified data (meaning patients will not be identifiable from this information) with external research organizations. The study protocol, including data sharing provisions has been reviewed by independent ethics committees in the the US and UK.
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Will pharmaceutical companies or other research organizations be involved?
Pharmaceutical and Medical Device companies play a key role in the development of new therapies and will be invited to collaborate with Cohort Science alongside academic and university-based researchers.
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Are there any risks associated with taking part?
Whilst every effort will be made to protect patient well-being and dignity, there can still be risks associated with participating in any medical research. Examples of risks include a data breach of information relating to your health information.
Participation in additional research opportunities will always be at patient discretion and will require additional patient consent. It is important to note that the risks will depend entirely on the specific additional research projects that patients participate in, so participation should be carefully considered using all information provided during the invitation. -
Will healthcare institutions be paid for patient involvement?
Participating healthcare institutions and their service providers will be paid administrative costs associated with their involvement in the study.
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Will patients receive any payment for participation?
No, patients will not receive any payment. However, we may allocate donations to relevant disease charities if we ask you to undertake additional tasks for the study such as completing longer questionnaires.
We will also keep you updated on the outcomes of research that uses your data and show you how your contribution is improving the lives of others living with disease.
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What will be involved if I consent to participate in a study?
If you choose to engage with a particular study, you will be presented with detailed information about the study, including what is involved and if the study requires your health data to be shared with another organisation. It is entirely your choice whether or not to be a part of the study, and if you decide not to participate, it will have no impact on the care you receive from your healthcare provider.
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Can I Opt-Out?
Patients can opt out of a study at any time without giving a reason by contacting the study support team using the contact details below. Any data that has already been contributed prior to their discontinuation will remain in the study database.
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I have more questions: who can I speak to?
If you have any questions, please do not hesitate to contact uMed at patientsupport@umed.io or +1 888 454 5580, and one of our dedicated team members will speak to you.
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Who is uMed?
uMed is a patient outreach service who work on behalf of healthcare providers and study sponsors, including Cohort Science. They will be providing patient contact and engagement services for this study.
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Who is Cohort Science?
Cohort Science develops and manages studies and registries and they are the study sponsors for AccessPD, AccessILD and AccessCMD.
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Will patients be informed of any results?
Each patient enrolled in the study will receive quarterly newsletters updating them on the progress of the registry. We always welcome feedback from our patients taking part and will give opportunities for this regularly.
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How is patient data used?
We will use information from patients’ medical records that is relevant to the study. We will only use information that we need for the study. This information will be available to researchers in a de-identified form, meaning patients will not be identifiable from this information. Patients will not have any rights to the data or any research developed from the data, including copyright. Patients will not benefit financially from any commercial uses of the data you share as part of the study. Cohort Science owns all rights.
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Will pharmaceutical companies or other research organizations be involved in ACCESS Registries?
Pharmaceutical and Medical Device companies play a key role in the development of new therapies and will be invited to collaborate with Cohort Science alongside academic and university-based researchers.
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Are there any risks associated with taking part in an ACCESS Registry?
Whilst every effort will be made to protect patient well-being and dignity, there can still be risks associated with participating in any medical research. Examples of risks include a data breach of information relating to your health information.
Participation in additional research opportunities will always be at patient discretion and will require additional patient consent. It is important to note that the risks will depend entirely on the specific additional research projects that patients participate in, so participation should be carefully considered using all information provided during the invitation. -
Will healthcare institutions be paid for patient involvement in ACCESS Studies?
Participating healthcare institutions and their service providers will be paid administrative costs associated with their involvement in the study.
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Will patients receive any payment for participation?
No, patients will not receive any payment. If Cohort Science or its affiliates, research partners or collaborators develop any new product, idea, or service using the data in the registry, including those that may have commercial value, patients will have no rights in any such product, idea, or service, and patients will not benefit financially from any of those efforts or product, idea or service.
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What if the patients no longer want to take part?
Patients can opt out at any time without giving a reason by contacting the study support team using the contact details below. Any data that has already been contributed prior to their discontinuation will remain in the study database.
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Who should patients contact if they need more information or wish to make a complaint?
Patients can contact our study support team at +1 888 454 5580 or they can email patientsupport@umed.io.
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What patient participation is expected?
Patients who consent to take part in the study will be sent health and disease related questionnaires which can be completed on a smartphone, computer or with a member of the Cohort Science study support team by phone. These questionnaires will be sent to patients approximately every month. They will ask specific questions regarding their experience of living with the condition (e.g. how their symptoms may have changed or how the condition impacts their daily activities and quality of life, etc).
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