FindMe2care was initiated in January 2024 as a platform to contact and possibly recruit patients with genetically confirmed diagnoses for research projects, specialized disease registries and clinical trials. It is a non-profit initiative that academic and non-academic genetic laboratories in Germany can join.

Patients who receive their diagnosis of a monogenic disease are provided with an individual QR code encrypting the details of their genetic report. This QR code can be used by a lay person to self-register on the platform without transmission errors. Upon successful registration, users receive diagnosis-specific information or inquiries from external entities. Such inquiries can be submitted by any interested entity (e.g. basic or clinical researchers) and will undergo evaluation by an independent scientific advisory board before being forwarded to patients.

Within the first 11 months of operations, 271 patients with 187 unique OMIM diagnoses registered using QR-codes provided by 4 participating genetic laboratories. 10 more genetic laboratories across Germany are committed to enrich their reports with FindMe2care-QR-Codes starting in the near future. FindMe2care received phenotypic and genetic patient data of excellent quality in the form of PhenoPackets, fulfilling the requirements of international research networks. To date, invitations to 3 specific disease registries, 2 studies and 1 patient organization were forwarded to eligible patients and will be provided prospectively to any new eligible patient registering on the platform.

FindMe2care acts as a data trustee for patients who wish to participate in basic or clinical research and benefit from personalized treatments, helping to improve care for genetic disorders.