WHAT ARE THE BENEFITS OF PARTICIPATING IN THE CLINICROWD REGISTRY ?
Providing your information to the CliniCrowd Registry and participating in this CliniCrowd Registry is voluntary. Participation may not benefit you personally, medically, or financially. However, your participation may help all those with your disease by increasing the understanding of these and other diseases, and you and your family by getting analysis of your own changes in symptoms based on the collected information. Collected data may help speed up research by collecting information scientists can use. Researchers may learn whether and how treatments work. Medical professionals may be able to improve how they treat the disease. Participants may receive information about opportunities to participate in research, medical advances, and other news from the CliniCrowd Registry. Participants will also have instant access to how other patients have responded to the CliniCrowd Registry questions.
WHO IS A PARTICIPANT ?
A participant is the patient that the registry information describes his (medical) status. The platform allows a family member / close friend / physician to fill in the registry for the patient, but the policy and consent below refer to the patient with the specific condition.
WHO WILL HAVE ACCESS TO THE DATA ON THE CLINICROWD REGISTRY ?
The CliniCrowd Registry is a project conducted by CliniCrowd. CliniCrowd owns the data contributed into the CliniCrowd database. The goal of the CliniCrowd Registry is to share detailed medical and other information with the crowd participating in the registry, scientists and other researchers, while still protecting your privacy. We take reasonable steps to secure the data you provide, taking into account the potential sensitivity of the data.
“Unidentifiable” information is information that cannot reasonably identify the individual to whom the information relates. Except as disclosed in this policy or other disclosures provided to you when you provide your information, we will not share any information that could reasonably identify you (participant) without your consent. In case you are not the participant and registering for a participant, you will be asked to provide medical information on the participant’s disease and diagnosis and participant’s authorization to provide such information.
You may be asked to update your database information. The CliniCrowd Registry may send you reminders and updates to the means of communication provided by you upon registration. Once you have created your CliniCrowd Registry account, your CliniCrowd account can be updated whenever there is a change in: your health, your medication, there is a new symptom or any other new information. If the CliniCrowd Registry cannot contact you, your account may become inactive. You have the right to revoke your consent, and end your participation in the CliniCrowd Registry at any time. In that case, the information you had supplied up to that point will be removed from the CliniCrowd Registry’s database. Please take into account that if CliniCrowd previously shared information with any third party, those third parties may continue to store and use your information even after you revoke your consent to participating in the CliniCrowd Registry.
WHO WILL HAVE ACCESS TO THE UN-IDENTIFIABLE DATA ?
CliniCrowd has access to your un-identifiable data. Crowd participants, scientists, researchers, and clinicians approved by CliniCrowd will be allowed to see the un-identifiable information. Your un-identifiable information may be combined with third party databases in order to develop analysis and global knowledge of these diseases that may lead to new research studies, and clinical treatments. CliniCrowd prohibits the owners of these third parties databases from attempting to re-identify the data and requires them to maintain the data in de-identified form. Your un-identifiable data might also be aggregated with the data of others and shared with registry participants. Generally, only the CliniCrowd Registry Coordinator and CliniCrowd Registry curator(s) will know that you have given personal information and will have access to such information for the purpose of contacting the participants and updating such information. However, there are a few exceptions that are listed in the next section.
WILL YOUR INFORMATION BE KEPT CONFIDENTIAL ?
CliniCrowd will make every reasonable effort to assure that your Personal information, in our possession, will be kept confidential. However, we cannot guarantee total privacy. Your personal information may be released if required by law. If information from the CliniCrowd Registry’s database is published or presented at scientific meetings, your name and other information that could reasonably be used to identify you will NOT be used. In the unlikely event that CliniCrowd ceases to exist, all attempts will be made to find another suitable entity to take ownership of the CliniCrowd Registry’s data. In any event your information shall be transferred out of the CliniCrowd Registry, you will be asked to give your consent to such transfer of your data (this includes personal information and un-identifiable information). The data of those not consenting for such a transfer will be destroyed. If all attempts fail to find a suitable entity, then all data collected by the CliniCrowd Registry will be destroyed, thus protecting your privacy, accept previously shared data that may continue to exist as detailed above. In such case, you will be contacted and informed of this action. If you would like more detailed information regarding the security of the CliniCrowd database, please contact the CliniCrowd Registry coordinator at mailto:[email protected]
WHAT ARE THE RISKS OF PARTICIPATING IN THE CLINICROWD REGISTRY ?
Participating in the CliniCrowd Registry includes questions that can be sensitive and you may feel uncomfortable answering. You do not have to share any information you do not want to.
The CliniCrowd Registry will store records and other information about you in a secure location and will grant access only to personnel authorized by the CliniCrowd Registry. However, just like other personal information kept by your health care providers, your banks, and others, even these safeguards cannot guarantee absolute protection of the data. Therefore you accept and acknowledge that there may be risks to your privacy. CliniCrowd is aware that if private information of the CliniCrowd Registry participants gets into the wrong hands, it can cause harm. CliniCrowd will take reasonable steps to notify affected participants in the event that CliniCrowd believes that information may have been compromised.
WHO SHOULD YOU CONTACT IF YOU HAVE ANY QUESTIONS ?