legal clarification
Laura Jentsch
Dear Sir/Madam,
In accordance with the mandate of Plattform § 65c, an association representing national German clinical cancer registries, we formally approach you on the following matter:
Clinical cancer registries in Germany are legally obligated to comprehensively document disease trajectories of tumor patients within their respective jurisdictions. The collected data is made available to medical practitioners and for research purposes. Clinical cancer registries operate strictly as non-proft entities, entirely devoid of any commercial interests.
The Plattform issues directives to cancer registries for the standardized documentation of cases. As part of these directives, a finalized list of genetic markers slated for documentation has been established. The proposal recommends the utilization of HGNC Nomenclature (HUGO Gene Nomenclature Committee) and HGVS Nomenclature (Human Genome Variation Society Nomenclature) in a universally simplified modified documentation format. In light of this, we formally request your consent to utilize your nomenclature and we kindly ask for the granting of this usage without any associated charges. Additionally, we seek clarification on any mandatory labeling requirements associated with its use.
We appreciate your prompt attention to this matter.
Yours sincerely,
Laura Jentsch
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Laura Jentsch, LL.B.
Juristische Beraterin
KKN | Klinisches Krebsregister Niedersachsen
Anstalt des öffentlichen Rechts
Sutelstraße 2 | 30659 Hannover
0511 277897-67
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