The Parkinsons.Community Site is intended for use in the United States. Any use outside the United States is at the risk of the user. You may not use the Parkinsons.Community Site in violation of any export laws or data transfer laws.
THE PARKINSONS.COMMUNITY SITE IS NOT INTENDED TO PROVIDE MEDICAL ADVICE. DISCUSSION OF MEDICAL AND HEALTH TOPICS ON THE PARKINSONS.COMMUNITY SITE IS PROVIDED FOR INFORMATIONAL PURPOSES ONLY AND SHOULD NEVER BE CONSTRUED AS, OR USED AS A SUBSTITUTE FOR, MEDICAL ADVICE, DIAGNOSIS OR TREATMENT. YOU SHOULD ALWAYS TALK TO YOUR HEALTH CARE PROVIDER REGARDING YOUR SPECIFIC MEDICAL NEEDS AND FOR ANY DIAGNOSIS OR TREATMENT.
FORMS ON THE PARKINSONS.COMMUNITY SITE ARE NOT DESIGNED TO ADDRESS MEDICAL EMERGENCIES. IF YOU HAVE A MEDICAL EMERGENCY, PLEASE IMMEDIATELY CALL EMERGENCY PERSONNEL (911) TO REQUEST PROMPT MEDICAL ATTENTION.
About the Parkinsons.Community Site
Research Catalyst focuses on matching individuals to clinical research trials seeking solutions to neurological disorders (each a “Study” or “Research Catalyst Studies”).
Research Catalyst also assists manufacturers of FDA approved medications, and/or devices (collectively “Treatment Options”) with providing information and education to individuals that might benefit from those Treatment Options or knowledge of those Treatment Options. The information provided might include information related to the disease or condition the Treatment Option is intended to treat, and information about the Treatment Option itself. Research Catalyst may share your Personal Information when providing these services to manufacturers. Research Catalyst is compensated by manufacturers of the Treatment Options and manufacturers conducting the Research Catalyst Studies for these services.
The Parkinsons.Community Site provides forms (collectively referred to herein as the “Parkinsons.Community Site Forms”) for prospective Study subjects healthcare providers or consumers to communicate with, and provide information securely to, Research Catalyst staff, and to submit information about themselves to Research Catalyst in order for Research Catalyst researchers (“Researchers”) to begin the process of determining if the individuals are eligible to participate in a Study or would potentially benefit from a particular Treatment Option. The Parkinsons.Community Site also provides medical education activities, including online surveys, to collect information from healthcare providers, consumers and potential Study subjects, for research, and data analytics related to information submitted to Parkinsons.Community Site.
Research Catalyst also assists in connecting patients to resources and advocacy, including legal services providers, and may share your Personal Information for these purposes, including but not limited to information submitted to Parkinsons.Community Site such as medical and demographic information submitted on the Intake Questionnaire Information You Actively Submit:
Research Catalyst focuses on identifying potential Study participants for clinical research and other research and educational activities. If you are interested in becoming a Study subject for this type of research or learning about potential Treatment Options, you may complete and submit the “Research Intake Questionnaire” that requests Personal Information about you (“Intake Questionnaire”) on the Parkinsons.Community Site. Research Catalyst will review the Personal Information in your Intake Questionnaire to determine whether we believe there is a research Study currently seeking participants that you may qualify for or a Treatment Option that you may potentially benefit from. Our staff may also contact you either by phone or via email to obtain further Personal Information from you related to your condition. If your medical condition appears to be consistent with Study inclusion criteria or the approved use of a particular Treatment Option, our staff may request that you complete and submit the Medical Records Release and/or submit certain medical records to our office. If, after reviewing your medical records and other Personal Information, our staff believes that you might qualify to participate in a Study or benefit from a particular Treatment Option, we may forward your medical records and other information to the research institution conducting the Study and/or to a study sponsor or manufacturer of a Treatment Option. Please note that Research Catalyst is not a healthcare provider and that the use of the Parkinsons.Community Site and submission of information to us through the Site does not create a physician-patient relationship between you and Research Catalyst.
Research Catalyst also collects certain types of Personal Information when you interact with Parkinsons.Community Site, such as when you:
- Register for an account with us or update your profile information;
- Participate in a medical education activity;
- Respond to an online survey;
- Request information from us about patient assistance resources, medical education activities and other medical communications;
- Submit comments, reviews, or other user-generated content on our site;
- Request customer or technical support from us; or
- Otherwise submit personal information to us via the website.
Should you actively submit information to Research Catalyst you agree that our staff may also contact you either by phone or via email to obtain further Personal Information or other information related to the information you actively submit on Parkinsons.Community Site.
Information Passively Submitted.
When you use our Parkinsons.Community Site, we may also passively track information about your computer, device or Internet connection, such as the IP address of your computer and/or Internet service provider, the date and time you access our website, the Internet address of websites from which you come to our websites, the type of device you are using to access the Parkinsons.Community Site, the Web browser and operating system you are using, and your movements and interactions on our website. This data is generated and collected automatically, as part of the standard operation of the Parkinsons.Community Site. Unless you also actively submit personal information to us, any information that is passively submitted typically does not allow us to identify you directly.
Publicly Available Information.
Where permitted by applicable law and relevant, we may also collect information about your specialty, hospital affiliation and academic or scientific publications from public resources, such as national or local registries of physicians, national or local medical associations, the public websites of hospitals, medical offices, clinics and educational institutions, academic journals, and professional social networking platforms such as LinkedIn.
Use of Personal Data Collected.
We use Personal Information that we collect about you through the Parkinsons.Community Site to:
- Upon request, create an account for you for the Parkinsons.Community Site;
- Respond appropriately to your inquiries;
- Update you regarding your account;
- Provide you with, maintain, secure, and improve our the Parkinsons.Community Site;
- Provide you with a customized experience in connection with our Parkinsons.Community Site;
- Improve the accuracy and relevance of the results you see when you interact with the search engine and the search engine’s integrated chatbot functionality that is part of our the Parkinsons.Community Site
- We may also use your Personal Information for our internal office administration, and to obtain payment for our services from manufacturers, Study sponsors or research institutions;
- We may use Personal Information as necessary to administer the Parkinsons.Community Site.
- Discharge our contractual obligations to you; and
- Comply with any legal obligations that apply to us.
We will store and maintain your Personal Information so that we can review your Personal Information in the future to determine if you are eligible for Treatment Options , any future Studies, or other services provided by Research Catalyst and to contact you to discuss your interest in participation in any such future Studies, new Treatment Options or other services provided by Research Catalyst. All Personal Information (including medical records) that you send to us, or authorize us to obtain on our behalf, will be stored by Research Catalyst in accordance with applicable law. If you later decide that you no longer want us to store your Personal Information and contact you for these purposes, please contact our Privacy Officer at [email protected].
To the extent permitted by applicable law, including in accordance with your consent where required by applicable law and/or granted above, we also use your personal information for the following purposes:
- Invite you to participate in online medical education activities, including accredited continuing medical education activities, and send you information about medical activities and promotional communications by email. If you do not wish to receive such emails, you may opt out by following the opt-out procedures below. We may also invite you via postal mail.
- Invite you to learn more about and request information from us about patient assistance resources, such as sample activities and co-pay incentive activities. If you do not wish to receive such emails, you may opt out by following the opt-out the opt-out procedures below.
- Send you medical newsletters including the top medical news in your field of interest and medical alerts. If you do not wish to receive such emails, you may opt out by following the opt-out procedures below.
- Send you invitations to complete market research surveys, by email, occasionally in exchange for honoraria. If you do not wish to receive such emails, you may opt out by following the opt-out procedures below.
- Send you information concerning Studies and Treatment Options that may be appropriate for you. If you do not wish to receive such emails, or marketing messages you may opt out by following the opt-out procedures below.
- Review the information provided by you and obtained from public resources to complete your profile and better understand which medical news, education activities and surveys may be of most interest to you.
- Share your information with the law firm PD Law Group for PD Law Group’s own purposes to contact you regarding the services PD Law Group provides. You consent to being contacted by PD Law Group regarding the legal services it provides. You may opt-out of us sharing your information with PD Law Group by following the opt-out procedures below.
We also perform statistical analyses of the users of the Parkinsons.Community Site to improve the content, design and navigation of the Parkinsons.Community Site. In these cases, we use aggregate or statistical data that cannot reasonably be used to identify you.
If you respond to a survey, we only use your Personal Information in connection with your survey responses for the purposes of: (i) verifying your eligibility to participate in a study; (ii) validating your identity and responses for the purposes of preventing duplicate or fraudulent responses; and/or (iii) processing your honoraria payment, if applicable. Unless we have obtained your explicit consent, we anonymize survey results before sharing them with third parties, although we may be required by applicable law to identify a particular respondent to comply with applicable legal requirements, such as adverse events reporting requirements.
Opt-Out Right and Updating Account Information
If you would like to opt out of receiving information and messages from Research Catalyst, including but not limited to, marketing messages about Studies and Treatment Options, invitations to medical education activities, medical surveys or medical newsletters from us, please opt-out at opting out at [email protected]. Even after you opt out or update your preferences, however, please allow us sufficient time to process your preferences. It may take up to 10 days to process your email related requests, and up to 30 days for all other requests. Even after you have opted out of receiving Study and Treatment Option information, invitations to medical education activities, medical surveys and medical newsletters from us, we may still contact you for transactional or informational purposes. These include, for example, customer service issues or any questions regarding a specific inquiry you made to us.
If you believe any information we have about you is no longer accurate or current or would like to access Personal Information we may have about you, please contact us by emailing opting out at [email protected]. Upon authenticating your request, we will update or amend your information, or provide you with access, but we reserve the right to use personal information obtained previously to verify your identity or take other actions that we believe are appropriate.
Disclosures of Information
We do not disclose your personal information with others, except as described herein and in the following circumstances and in accordance with applicable law:
- With your consent;
- To our agents and service providers, who act on our behalf and under confidentiality agreements to deliver services, provide IT support, and help us fulfill the other purposes set forth above;
- If you participate in a medical education activity that we publish and thereby obtain a continuing medical education or similar certificate, we may disclose the fact that you participated in the activity to the medical school or institute that accredited the activity for the purposes of complying with professional accreditation recordkeeping requirements;
- If we publish an activity from another medical education provider, and thereby obtain a continuing medical education or similar certificate, we may disclose the fact that you participated in the activity to the medical education provider for the purposes of complying with professional accreditation recordkeeping requirements;
- To PD Law Group for their own marketing and advertising activities and to contact you about the services that PD Law Group provides. As required by applicable law, including, without limitation, in response to any government or regulatory agency request, to cooperate with law enforcement investigations, or upon receipt of any court order; and
- To courts and public authorities to protect you, us, or third parties from harm, such as fraud.
If you respond to a market research survey, we do not disclose your Personal Information to the third parties on whose behalf we are conducting such research except with your consent or where required by applicable law, such as to comply with applicable adverse incident reporting requirements. We otherwise only disclose market research results to third parties in aggregate (as a collection of total responses), and individual responses of respondents are not disclosed in association with the respondent’s Personal Information.
Medical Records Release Form
If we believe you qualify for a Study or Treatment Option, we may decide to assist you in obtaining your medical records and ask you to complete and submit a Medical Records Release Form (“Records Release Form”) on the Parkinsons.Community Site. We will submit this form to all of your doctors that you have listed in this Release Form and ask that they send copies of your medical records to us. Alternatively, we may ask that you print the form and send it to your doctors to request that your medical records be sent to us.
Upload Medical Records Form
If you have medical records or other relevant information that you would like to submit to us, you may use the Upload form to securely send information to our office. This permits secure submission of medical records. Please do not send medical records by email, as email may not be secure.
Warning about Email Communications
When you submit Personal Information to us through the Parkinsons.Community Site, you are representing and warranting to us that you are at least 18 years of age, that you are who you say you are and that you have the authority to disclose that Personal Information to us through the Parkinsons.Community Site. If you do not have the authority to do so, you may not submit Personal Information to us through our Parkinsons.Community Site. You release Research Catalyst, our shareholders, directors, officers, employees, agents and customers from any claims and damages, known and unknown, arising out of or in any way connected with your unauthorized submission of Personal Information to us through the Parkinsons.Community Site.
You can instruct your browser to refuse all cookies or to indicate when a cookie is being sent. The Help feature on most browsers provides information on how to accept cookies, disable cookies or to notify you when receiving a new cookie.
We may use third party products, such as Google Analytics, to assist us with the effectiveness of our advertising campaigns on other third-party websites. When you visit a page that uses one of these products, either on our Parkinsons.Community Site or one of one of the sites on which we have placed our advertisements, various cookies may be sent to your browser. These may be sent from a few different domains. These cookies enable us to use other services in conjunction with trusted 3rd party providers to help us to measure the effectiveness of our advertising efforts and these third party services may send their own cookies to your browser and collect information about your use of our Parkinsons.Community Site.
Google recommends installing the Google Analytics Opt-out Browser Add-on – https://tools.google.com/dlpage/gaoptout – for your web browser if you wish to opt-out. Google Analytics Opt-out Browser Add-on provides visitors with the ability to prevent their data from being collected and used by Google Analytics.
For more information on the privacy practices of Google, please visit the Google Privacy & Terms web page: http://www.google.com/intl/en/policies/privacy/
Your California Privacy Rights
California Consumer Privacy Act. The California Consumer Privacy Act of 2018 (“CCPA”) provides California residents with specific rights regarding their Personal Information. This section describes your CCPA rights and explains how to exercise those rights.
Upon verification of your identity you may:
- No more than twice in any 12-month period, request disclosure of the following information:
- Categories of Personal Information we collect.
- Categories of sources from which Personal Information is collected.
- Categories of Personal Information sold or disclosed to third parties.
- Categories of third parties with whom such Personal Information is sold or disclosed.
- Business or commercial purpose for collecting or selling Personal Information.
- Specific pieces of Personal Information we collect.
- Request deletion of your Personal Information, subject to the exceptions provided by law.
- Opt-out from having your Personal Information sold to third parties, if applicable.
California residents may submit such requests to [email protected]. We share Personal Information with pharmaceutical and device manufacturers and their designees for direct marketing, promotion and educational activities related to Treatment Options that may be suitable for your condition or of interest. We also share Personal Information with entities that are conducting Studies that you may qualify for or wish to be informed about. We also share Personal Information with PD Law Group for their own marketing and advertising activities and to contact you about the services that PD Law Group provides. We do not otherwise share Personal Information with any third party for direct marketing purposes.
Please note that these rights apply only to select California consumers and exclude job applicants, employees, and business contacts. Only you, or a person registered with the California Secretary of State that you authorize to act on your behalf, may make a verifiable consumer request related to your Personal Information. Except where you have provided an agent with a Power of Attorney pursuant to Sections 4000 – 4465 of the California Probate Code, when using an authorized agent you must: (1) provide the agent with signed permission clearly describing their authority to make a request on your behalf; (ii) verify your own identity; and (iii) directly confirm that you have provided the authorized agent permission to submit the request. That agent must also be able to verify their identity with us and provide us with their authority to act on your behalf.
The verifiable consumer request initiated by you or your authorized agent must:
- Include your full legal name, email, and phone number, which we will need to contact you in order to verify that you are the person about whom we collected Personal Information or an authorized representative.
- Describe your request with sufficient detail that allows us to properly understand, evaluate, and respond to it.
We cannot respond to your request or provide you with Personal Information if we cannot verify your identity or authority to make the request and confirm the Personal Information relates to you. Making a verifiable consumer request does not require you to create an account with us. One of our representatives will contact you in order to verify your identity. You may need to provide additional information in order to verify your request. Depending on the nature of the request, we may require additional verification actions be taken, including but not limited to providing a signed declaration under penalty of perjury that you are the consumer whose Personal Information is the subject of the request. We will only use this information to verify the requestor’s identity or authority to make the request.
We may deny your deletion request if retaining the information is necessary for us or our service provider(s) to:
- Complete the transaction for which we collected the Personal Information, provide a product or service that you requested, take actions reasonably anticipated within the context of our ongoing business relationship with you, or otherwise perform our contract with you.
- Detect security incidents, protect against malicious, deceptive, fraudulent, or illegal activity, or prosecute those responsible for such activities.
- Debug products to identify and repair errors that impair existing intended functionality.
- Exercise free speech, ensure the right of another consumer to exercise their free speech rights, or exercise another right provided for by law.
- Comply with the California Electronic Communications Privacy Act (Cal. Penal Code § 1546 ).
- Enable solely internal uses that are reasonably aligned with consumer expectations based on your relationship with us.
- Comply with a legal obligation.
- Make other internal and lawful uses of that information that are compatible with the context in which you provided it.
We endeavor to respond to a verifiable consumer request within forty-five (45) days of its receipt. If we require more time (up to 90 days), we will inform you of the reason and extension period in writing. We do not charge a fee to process or respond to your verifiable consumer request unless it is excessive, repetitive, or manifestly unfounded.
The CCPA provides the right to be free from discrimination if you choose to exercise your rights under the statute, and we will not discriminate by:
- Denying you products or services.
- Charging you different prices or rates for products or services, including through granting discounts or other benefits, or imposing penalties.
- Providing you a different level or quality of products or services.
- Suggesting that you may receive a different price or rate for products or services or a different level or quality of products or services.
Other California Privacy Rights. California residents have the right to receive information that identifies any third party companies or individuals that Research Catalyst has shared your Personal Information with in the previous calendar year, as well as a description of the categories of Personal Information disclosed to that third party. You may obtain this information once a year and free of charge by contacting us at [email protected].
Your ‘Do Not Track’ Browser Setting. Some web browsers incorporate a Do Not Track (“DNT”) feature that signals to the websites that you visit that you do not want to have your online activity tracked. At this time, our Website does not respond to DNT signals. Other third party websites may keep track of your browsing activities when they provide you with content, which enables them to customize what they present to you on their websites.
Security of Personal Information
The security of the Personal Information that you provide to us through the Parkinsons.Community Site is important to us, and we implement and maintain reasonable, commercially acceptable security procedures and practices appropriate to the nature of the information we store, in order to protect it from unauthorized access, destruction, use, modification, or disclosure.
The Parkinsons.Community Site is Hypertext Transfer Protocol Secure (HTTPS). HTTPS is the protocol over which data is sent between your browser and the Parkinsons.Community Site and the “S” stands for ‘Secure’ meaning that all communications between your browser and the Parkinsons.Community Site are encrypted.
We use reasonable efforts to keep the Parkinsons.Community Site and Personal Information safe and secure, but you are still using the Parkinsons.Community Site at your own risk. There is no guarantee that the Parkinsons.Community Site is 100% safe and secure. We are not responsible for the actions, content, information, or data of third parties, and you release us, our directors, officers, employees, and agents from any claims and damages, known and unknown, arising out of or in any way connected with any claim you have against any such third parties.
Prohibited Use of Parkinsons.Community Site
You agree not to submit any information to through the Parkinsons.Community Site that:
- Is defamatory, libelous, abusive, or obscene, including, without limitation, material which encourages conduct that would constitute a criminal offense, give rise to civil liability or otherwise violate any applicable local, state, federal, or international law;
- Infringes on the copyright or any other proprietary right of a third party;
- Would invade the privacy of any other person;
- Contains a virus, worm, trojan horse, time bomb, constitutes ransomware, or contains or constitutes any other harmful program or component; or
- Attempts to gain unauthorized access to other computer systems or networks connected to the Parkinsons.Community Site.
Intellectual Property Ownership
Research Catalyst alone (and its licensors, where applicable) shall own all right, title, and interest, including all related intellectual property rights, in and to the Parkinsons.Community Site, all content therein (including, but not limited to, the Records Release Form and any questionnaires, surveys or information-gathering documents), and any suggestions, ideas, enhancement requests, feedback, recommendations, or other information provided by you or any party relating to the Parkinsons.Community Site or any services provided in connection therewith. You may not remove, alter, or obscure any trademark or copyright notice or any other proprietary notice that appears on or in the Parkinsons.Community Site. Research Catalyst’s name, logo, and the product and service brand names associated with the Parkinsons.Community Site are trademarks of Research Catalyst and no right or license is granted to use them. All logos, trademarks, service marks, domain names and trade names appearing on or within the Parkinsons.Community Site (collective “Marks”), whether registered or not, are the sole property of Research Catalyst or their respective owners. You may not use any Marks without the express written permission of Research Catalyst or their owners.
Modifications, Termination, Interruption and Disruptions to the Parkinsons.Community Site
You agree, confirm and acknowledge that we may modify, suspend, disrupt or discontinue the Parkinsons.Community Site whether to all users of the Parkinsons.Community Site or to you specifically, at any time with or without notice to you. You agree and acknowledge that we will not be liable for any of the aforementioned actions or for any losses or damages that are caused by any of the aforementioned actions. We do not guarantee that the Parkinsons.Community Site will be uninterrupted or that it will be secure, consistent, timely or error-free.
We provide the Parkinsons.Community Site for your convenience only. Because of the possibility of human and mechanical error, as well as other factors, WE DISCLAIM ANY EXPRESS OR IMPLIED WARRANTIES OF ANY KIND, INCLUDING WITHOUT LIMITATION THOSE OF MERCHANTABILITY, REPRESENTATION ABOUT ITS ACCURACY, COMPLETENESS, OR APPROPRIATENESS OR FITNESS FOR A PARTICULAR PURPOSE, AND NON-INFRINGEMENT. Please note that some jurisdictions may not allow the exclusion of implied warranties, so some of the above exclusions may not apply to you.
Limitation of Liability
WE WILL NOT BE LIABLE TO YOU OR ANY THIRD PARTY FOR ANY DELAY, DIFFICULTY IN USE, INACCURACY OR INCOMPLETENESS OF INFORMATION, UNAUTHORIZED ACCESS, COMPUTER VIRUSES, MALICIOUS CODE, LOSS OF DATA, COMPATIBILITY ISSUES, OR OTHERWISE. WE WILL NOT BE LIABLE TO YOU OR ANY THIRD PARTY FOR ANY DIRECT, INDIRECT, SPECIAL, INCIDENTAL, CONSEQUENTIAL, EXEMPLARY OR PUNITIVE DAMAGES (INCLUDING LOST PROFITS, LOST DATA. COST TO PROCURE REPLACEMENT SERVICES OR GOODS, OR BUSINESS OPPORTUNITIES) ARISING OUT OF YOUR ACCESS TO OR USE OF OUR PARKINSONS.COMMUNITY SITE, OR ANY ACTS, OMISSIONS, DEFECTS, SECURITY BREACHES, OR DELAYS, REGARDLESS OF THE BASIS OF THE CLAIM OR IF WE HAVE BEEN ADVISED OF THE POSSIBILITY OF SUCH DAMAGE OR LOSS. If this limitation of liability is not wholly enforceable as drafted, in no event shall damages payable by Research Catalyst or its officers, directors, employees, agents, or owners exceed $5.00 USD.
You agree to defend, indemnify and hold us harmless against any claims, losses, damages, expenses or costs (including without limitation reasonable costs of litigation such as attorneys’ fees and expert fees) arising from, incurred as a result of, or related to your breach of this Agreement, your unauthorized or illegal use of the Parkinsons.Community Site or the information contained within or transmitted through it.
Effective Date: 20 April 2022