FAQs – for physicians

What is FindMe2care?

FindMe2care is a medical contact platform. It serves to mediate and establish contact between patients with genetic diseases and relevant interest groups that are, for example, developing therapies for these diseases. Interest groups are, e.g., university research institutions, clinical study centers, patient registries, pharmaceutical companies, or patient advocacy groups. To ensure that patients only receive inquiries that are relevant to them, their disease-related data is checked before each inquiry. For this purpose, patients must register their human genetic findings.

A QR code is required for this registration, which is generated by the human genetics laboratory that carries out the genetic test to confirm the genetic diagnosis. No data is transferred to the FindMe2care server when the code is generated. The data is only transferred once the QR code has been scanned and the patient has given their consent.

The above-mentioned interest groups cannot contact patients directly. Only information or inquiries are passed on to patients via the platform, who then decide for themselves whether they wish to contact an enquirer.

What added value does FindMe2care have for patient care and university research?

The FindMe2care platform promotes networking between the outpatient care sector, where a very large proportion of patients with genetic diseases are initially cared for and diagnosed, and university research institutions and specialized centers for diseases, which provide personalized treatment to patients with confirmed diagnoses or continue to care for them as part of clinical studies.

The direct encoding of the genetic diagnosis by a specialist in human genetics in a QR code ensures an interoperable minimum data set with a data quality standard that enables patients to register themselves on the FindMe2care platform. This ensures that a patient with a disease can be “found” from the time of diagnosis if they so wish, regardless of the human genetics laboratory in Germany in which the diagnosis was made.

Who is legally behind FindMe2care?

The legal operator of the FindMe2care platform is RxOME GmbH, which was founded by the two human genetics institutions amedes Medizinische Dienstleistungen GmbH and the Medizinisch Genetisches Zentrum (MGZ). The aim of RxOME GmbH is to promote and strengthen the exchange between different interest groups in the field of medical genetics (such as patients, human geneticists, medical staff from other disciplines, and pharmaceutical companies). One means of achieving this is the development and distribution of software and online solutions. With FindMe2care, RxOME GmbH wants to achieve precisely this goal and, at the same time, put the patient in the foreground.

RxOME GmbH has no intention of making a profit.

Who “owns” the stored data?

Patients retain sovereignty over their data. FindMe2care is bound by the General Data Protection Regulation (GDPR). Patients give the platform their earmarked consent to use the data exclusively for contacting them to inform them about inquiries from interest groups, also on condition that no third parties gain access. Due to this purpose limitation, any other use of the data (e.g., “monetization”) is excluded.

Which human genetics laboratories generate QR codes for FindMe2care?

The generation of QR codes for encoding the confirmed genetic diagnosis as a prerequisite for patient self-registration with FindMe2care is open to all accredited human genetics laboratories. The aim is for as many human genetics laboratories as possible to participate, and this is expressly supported by a structured “onboarding” process.

How long has FindMe2care been around and what are the targeted milestones?

The idea for FindMe2care has been around for a while; preparation and development began in 2022, and the implementation of QR code generation in the first laboratories as part of a pilot phase will begin at the end of 2023. Over the course of 2024, as many more laboratories as possible are to be added as part of a structured “onboarding” process.

How is the FindMe2care Scientific Board appointed?

The task of the FindMe2care Scientific Board is to check the reliability and scientific validity of information and contact requests sent to patients via FindMe2care. In particular, experts from university centers, representatives of medical societies, and European Reference Networks (ERNs) for diseases will also be involved.

Who can make inquiries to FindMe2care?

Stakeholders include university research institutions, clinical trial centers, patient registries, pharmaceutical companies, and patient advocacy groups. The task of FindMe2care’s scientific board is to check the reliability and scientific validity of information and contact requests submitted to patients via FindMe2care.