Privacy Policy

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 understand and agree that your participation in the CliniCrowd Registry involves your provisions of health information to CliniCrowd. This Privacy Policy provides information about how CliniCrowd collects, uses and shares the information you will provide. By signing the CliniCrowd Consent, attached hereto as Appendix A, you acknowledge that you have read and agree to the practices addressed in this Privacy Policy.

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:Registry@CliniCrowd.info

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 ?

If you have any questions about the registration process, about participation in the CliniCrowd Registry or about reporting problems that result from your participation in the CliniCrowd Registry, please contact the CliniCrowd Registry Coordinator at mailto:Registry@CliniCrowd.info. For additional information regarding the terms and conditions of this web site or the privacy policy please go to the documents “Terms and Conditions” and “Privacy Policy” which can be found at the Web Site. By clicking to agree to participate on the Informed Consent Form, you do not give away any legal rights or benefits to which you are otherwise entitled.   By clicking to agree to participate on the CliniCrowd Portal, 1) you have indicated that you understand your rights and want to take part in this CliniCrowd Registry; 2) you have read and understand the information above; 3) you have had the opportunity to ask questions; 4) you have had time to consider fully whether you want to join the CliniCrowd Registry; 5) you have consented to participate and consent to the practices described herein.

 

Your agreement to the privacy policy as indicated on the CliniCrowd Portal indicates your agreement with this document and the terms of the CliniCrowd Registry.

Appendix A

Understanding Your Participation & Informed Consent

UNDERSTANDING YOUR PARTICIPATION

For the purpose of this consent, “the patient” or “the participant” will refer to the person diagnosed with one of the diseases or syndrome you are reporting. “You” will refer to the person entering the information. This may be the affected individual, a family member or guardian of the affected individual (the person legally responsible for the care and maintenance of the affected individual, or entering information for a deceased individual). “CliniCrowd database refers to a place where medical information, family history and other related information from the registry is collected and stored.

Information from the CliniCrowd Database will be used to further understand these diseases and to develop new treatments which are natural and not promoted by the Pharma industry, due to no economic incentive.

WHAT KIND OF COMMITMENT DO YOU NEED TO MAKE TO PARTICIPATE IN THE CLINICROWD REGISTRY ?

Participation in this registry is voluntary.  You have the right to know about the procedures, risks, and benefits of participating in the CliniCrowd Registry. To participate in this registry, you will need to give your consent after reading this document, “Understanding your Participation.”  If you answer, “yes” to the statements affirming your participation and use of the information you are providing, you will have “consented.” You will find this statement of consent at the end of the consent form.  Even if you decide to participate, you can change your mind later and leave the registry. For the implication of closing your account in CliniCrowd, see the privacy policy. Please take your time to make your decision and discuss it with your family, friends, and caregivers.

WHOSE DATA ARE WE COLLECTING IN THE CLINICROWD REGISTRY ?

The CliniCrowd Registry will include individuals who have a diagnosis of one of the diseases described in www.CliniCrowd.info web site.  The diagnosis must be confirmed by a physician, usually with a positive clinical diagnosis.  Please discuss any questions with the CliniCrowd Registry Coordinator (see contact information at the end of this document).

WHO CAN GIVE CONSENT ?

You are being asked to participate in this registry because you are diagnosed with one of the diseases in this site. Patients over the age of 18 who understand the consent form (and who do not have a legal guardian) are eligible to join the CliniCrowd Registry on their own.  Otherwise, the legal guardian or parent of the patient must give consent for the patient to join.

WHAT ARE THE STEPS TO FILLING OUT THE CLINICROWD REGISTRY ?

If you decide to participate in this CliniCrowd Registry, you will need to read “Understanding Your Participation & Informed Consent,” above to complete the Consent form, and click on the box to confirm that you understand the risks and benefits of participation, and that you agree to participate in the registry. You will then be directed to the registration form, and will be asked to create a login username and password.  After completing the registration form, you will be ready to continue to the registry survey. You will be asked to provide medical information and patient’s disease and diagnosis (mainly changes in disease’s symptoms).  You will be asked to update your information at least four times per year.  The CliniCrowd Registry will send you a reminder each quarter. Once created, your CliniCrowd Registry account can be updated whenever there is a change in; patient’s health, medication, symptoms or any other information previously recorded. If the CliniCrowd Registry cannot contact you, your account may become inactive. The CliniCrowd Registry may also ask you or your doctor to add medication information, and any other relevant reports or testing results.

WHAT ARE THE COSTS OF TAKING PART IN THIS CLINICROWD REGISTRY ?

There is no charge for you to participate in this registry.

DO YOU HAVE TO PARTICIPATE AND CAN YOU STOP PARTICIPATING IN THE DATABASE ?

Participating in the CliniCrowd registry is your choice and is completely voluntary. If you decide to participate in the database, you can decide to stop at any time.  Simply contact the CliniCrowd Registry coordinator, and all of your data will be removed from the CliniCrowd Database.  Un-identifiable data shared will also be removed. However, un-identifiable data cannot be retrieved from researchers that have already accessed it prior to your request for removal. CliniCrowd may withdraw you from the CliniCrowd Registry if circumstances arise which warrant doing so, even if you would like to continue. We will tell you about new information or changes in the CliniCrowd Registry that may affect your willingness to continue in the study.

WILL YOU BE COMPENSATED FOR BEING IN THIS REGISTRY ?

You will not be paid for taking part in this study. The CliniCrowd Registry maintains ownership of the un-identifiable data collected and compiled by the CliniCrowd registry and is the guardian of the information contained within the CliniCrowd Database. You will have no title or ownership or interest in such data derived from the CliniCrowd Database and no right or entitlement in any research or research product using or derived from the data.  However on the CliniCrowd website, you will have access to statistics on how others with these conditions have responded to questions, and if you would like to, you will have access to view new studies of these diseases.

WHO SHOULD YOU CONTACT IF YOU HAVE ANY QUESTIONS ?

If you have any questions about the registration process, about participation in the CliniCrowd Registry or about reporting problems that result from your participation in the CliniCrowd Registry, please contact the CliniCrowd Registry coordinator at mailto:Registry@CliniCrowd.info. For additional information regarding the terms and conditions of this web site or the privacy policy please go to the documents “Terms and Conditions” and “Privacy Policy” which can be found on the site. By clicking the “I agree” to participate on the Informed Consent Form, you do not give away any legal rights or benefits to which you are otherwise entitled. By clicking “I agree” to participate on the Informed Consent Form you have: (1) indicated that you understand your rights and want to take part in this CliniCrowd Registry; (2) read and understand the information above; (3) had the opportunity to ask CliniCrowd and/or any other professional and/or individual, questions; (4) had time to consider fully whether you want to join the CliniCrowd Registry; (5) consented to participate and provide the CliniCrowd Registry with personal and un-identifiable information.

 

You understand and agree that your participation in the CliniCrowd Registry involves your provision of health information. The CliniCrowd Privacy Policy provides about how CliniCrowd collects, uses, and share the information you provide.