FAQs – for patients

FindMe2care is a medical contact platform designed to connect patients with genetic diseases.

If human genetic laboratory diagnostics have identified a genetic change that can clearly explain your suspected clinical diagnosis, then you have a genetically confirmed diagnosis. A genetically confirmed diagnosis is the prerequisite for diagnosis-related medical care.

For many genetic diseases, there are currently few or no adequate treatment options. However, numerous universities, scientific institutions, and pharmaceutical companies are conducting intensive research into making these available. Patient registries and patient organizations are also helping to improve research, networking, and care for diseases. For diseases, in particular, it is important to reach as many patients as possible in advance. This is necessary in order to involve them in scientific studies to research their clinical picture and to be able to offer them the latest treatment options as quickly as possible.

After registering with FindMe2care, you can be found via the platform in order to:

• receive information tailored to your individual disease,
• be informed about current treatment options,
• receive information about suitable patient organizations,
• receive information about suitable patient registries,
• be made aware of clinical studies or scientific research projects that are looking for patients with your specific disease.

An independent expert board checks all requests to the FindMe2care platform in advance and ensures that only serious contacts are forwarded.

If a genetic diagnosis has been confirmed by a human genetic test, you will find the QR code for registration attached to your human genetic laboratory report.

This may have the following reasons:

• The human genetic report was created before 2024 and, therefore, before the FindMe2care contact platform was established.
• The human genetic laboratory is not (yet) one of the laboratories that issue QR codes for registration on the FindMe2care contact platform.
• The genetic test did not provide a definitive genetic diagnosis.

If the human genetic findings do not contain a QR code, registration is currently (turn of the year 2023/2024) not possible. However, FindMe2care is working on a solution to make it possible for participating laboratories to issue QR codes at a later date once FindMe2care has been established.

The most reliable way to scan the QR code is currently via the camera function of a cell phone.

You can reach our support team for technical questions about registration at info@findme2care.de. Please give us your preferred contact details (telefone number or e-mail). We will support you as soon as possible.

You will only be contacted by FindMe2care.de itself or by the data trustee office behind it.

If you have registered several findings from different laboratories, these can only be merged by the data trustee office. If there are any uncertainties (e.g., if your name or address has changed in the meantime), you may be contacted by the data trustee office for clarification purposes.

FindMe2care will contact you to forward requests and information directly related to your genetic diagnosis. Other “third-parties” (e.g., study centers or pharmaceutical companies) will not be able to contact you directly via the platform at any time.

Interest groups such as study centers, pharmaceutical companies, patient organizations, or patient registries can submit search queries to FindMe2care. To do so, they enter filter criteria for a targeted search for patients with specific genetic diagnoses. In addition, they must provide information on the purpose of the contact request – such as the background of a research project. Before a request is sent to patients via FindMe2care, the search request is reviewed by a scientific committee made up of independent experts (FindMe2care Board). The information or contact request is only released and transmitted to registered suitable patients if it has been assessed as serious and valid.

The QR code contains the following information from the genetic report that is relevant for FindMe2care:

• Information on the affected gene,
• Information on the disease-causing alteration(s) in these genes,
• Information on the existing symptoms that can be assigned to the genetic changes,
• Information on your age (in years) and gender,
• Details of the examination method used,
• Information on when and in which laboratory the findings were obtained.

If you read the QR code with a conventional scanner app, you will largely see “meaningless” strings of characters. This is because the above-mentioned data was initially encrypted end-to-end by the laboratory so that it can only be decrypted in the protected FindMe2care platform area. This procedure is necessary to prevent unauthorized reading of the sensitive data in transit from your PC / smartphone to the platform. This explains why you cannot view the data in plain text.

The QR code is usually generated automatically in the participating human genetics laboratories and only contains data that you can also read in plain text in the genetic report itself.

No, your data will not be passed on to anyone. No one who sends you a contact request via FindMe2care will receive your contact details or have access to your personal data. If you are forwarded information or an inquiry via the FindMe2care platform, you always decide for yourself whether or not you wish to respond and contact the enquirer.

Access to the data stored at FindMe2care is strictly regulated and is not possible for unauthorized third parties. This means that no one except authorized FindMe2care employees and the data trustee can view the data. The relevant employees are subject to a duty of confidentiality. In particular, no study centers or pharmaceutical companies can access the data. FindMe2care is bound by the General Data Protection Regulation (GDPR). Patients give the platform their earmarked consent to use the data exclusively for the above-mentioned contacting, also on condition that no third parties gain access. Due to this purpose limitation, any other use of the data (e.g., “reselling the data”) is excluded, as for any use of the data that goes beyond the terms of use, a correspondingly different consent would have to be obtained from the data subjects.

The protection of your personal data is very important to us, as your medical data is particularly worthy of protection. We have therefore taken numerous technical and organizational measures to ensure that your data is protected as completely as possible while at the same time making it easy to use the FindMe2care processes. The European and national data protection regulations are complied. In particular, the General Data Protection Regulation (GDPR) and the Federal Data Protection Act (Bundesdatenschutzgesetz, BDSG) form the legal basis.

Further information can be found in the data protection documents:
Data protection information for patients
Data protection declaration

The controller within the meaning of the General Data Protection Regulation (GDPR) and other national data protection laws as well as other data protection regulations, is:

RxOME GmbH,
Bayerstraße 3-5,
D-80335 Munich,
info@rxome.net

All data is stored exclusively on servers in Germany that are subject to German data protection standards (GDPR, BDSG).

The FindMe2care project consists of three areas, which are operated on separate systems:

1. FindMe2care.de: This is where user accounts are created and managed. This website is used to communicate with you. Relevant information is stored for you, e.g., on studies that are looking for people with your clinical picture and your needs in order to research new therapies.
2. The protected medical platform: The gene variants and symptoms of registered patients are stored on this platform. No data that can be used to identify you personally (e.g., surname, first name, or date of birth) is stored here.
3. The data trustee office: This system is interposed between the web portal and the medical platform, which prevents unauthorized persons from assigning medical data to the respective patients. The trustee manages the patient data that is not contained in the medical platform, i.e., your surname, first name, date of birth, and postal address. This ensures that you can only be assigned to the medical data by name by authorized, designated data trustees.

The medical data is forwarded (in encrypted form) once to the protected medical database via FindMe2care.de when the findings are registered and are not stored on FindMe2care.de. Personal data such as your name and date of birth are also not stored on FindMe2care.de but are forwarded directly to the data trustee.

When you access the FindMe2care.de website with your web browser (e.g., Google Chrome, Safari, Firefox, or Microsoft Edge), your device (smartphone or PC) connects to our FindMe2care.de server and displays the FindMe2care.de website.

Here, you can create a user account and then register your genetic findings (or the findings of the person for whom you have custody) using the QR code on your human genetic report. To create the user account, the necessary data (usually your email address and the password you have chosen) is transferred to the FindMe2care server.

Your medical data will only be transferred from your device (PC or smartphone) to the FindMe2care server when you register your findings after you have agreed to the corresponding declaration of consent.

When you start the findings registration process, the web browser on your PC or smartphone downloads the part of the FindMe2care.de website that you need for registration. This happens automatically; you do not have to do anything actively. You will then be guided through the registration process in your web browser. This takes place entirely on your device, even if the user interface in the web browser still looks like the FindMe2care.de website you accessed previously. No personal or medical information is transmitted to our server during the entry of diagnostic data.

When entering your personal and health data, you will be asked to give your consent that you agree to the entry of your findings in our protected platform and the future contacting of your person. You must then actively start the transfer. Only then will the data be transferred to our FindMe2care.de server. This server forwards the sensitive data to our protected platform. (see also “Where is my data stored?”)

No. The QR code on the human genetic laboratory report is only an “encryption” of the genetic diagnosis, your age (in years), and your gender; it does not contain any other personal data (such as name, date of birth, etc.). The laboratory does not transfer any data (neither personal nor medical data) to FindMe2care.de.

You have the right to receive information about the personal data concerning you at any time. Your data will be corrected or deleted if it is incorrect and there is no statutory retention period or legitimate interest in further storage, in particular, if this is in your own interest and does not conflict with any interests worthy of protection or any legal claims. If the processing of your personal data is not lawfully justified, you have the right to object to the processing. This also applies, in particular, if your data is processed on the basis of your consent. According to Art. 20 GDPR, you have the right to data portability.

If you have any questions about data protection, please contact

Jan Alkemade,
Alkemade IT-Security e.K.
Egerländer Str. 9
61239 Ober-Mörlen
Phone: +49 6002 939593
E-mail: jan.alkemade@alkemade-it.de

To exercise the right to lodge a complaint, the supervisory authority responsible for data protection is

Bavarian State Office for Data Protection Supervision
President
Mr. Michael Will
Promenade 18
91522 Ansbach

No data is transferred to a third country.