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The collection and interpretation of patient genetic profiles is still insufficiently standardized. This means a lot of duplication, but most importantly: the patient still benefits too little from the benefits of DNA analysis. A broad partnership of scientists, doctors and patients has received a grant from ZonMw to create a working guide for managing DNA data. This ambitious project, led by the UMCG Genetics Department, brings science and patient care closer together.
Tailor-made treatment
More and more people have genomic data (data on their genetic profile). For example, because patients with cancer or a rare disease are now routinely screened for abnormalities in their complete DNA. This is also called "sequencing". These data are valuable for the development of personalized medicine (tailor-made treatment). For example, practitioners can better account for inherited differences in the response of a tumor to anticancer drugs. And the data help to establish a timely diagnosis (and possible treatment) of rare diseases because they show what features of DNA are related to the disease. But then, this data must be collected and stored unambiguously, so that it can be compared and reused.
Need for Harmonization
In KWF Kankerbestrijding's Personalized Medicine research program, Zilveren Kruis and ZonMw have recently been selected for how the process of collecting and processing genome data takes place in practice. And where are the gaps. Dozens of experts and professionals involved were interviewed on this subject. This revealed a strong need for harmonization and standardization of data management in DNA research. A standard method of collecting and interpreting genome data is needed to transmit research data and study results more quickly to the patient. On the basis of "gap analysis", a broad national partnership with a ZonMw grant will create a working guide for data management. Professor Morris Swertz, from the Department of Genetics of UMCG, is the project leader.
Comprehensible Counseling
The process of sequencing of the genome is complex and differs a lot of the professionals involved. But it always starts and ends with the patient and his doctor. From the analysis of the genetic profile, it is necessary to provide an unambiguous and, above all, understandable advice with which they can continue. The workbook also begins with the patient and comes back to that. Important aspects are the reproducibility and reuse of data, elements of the FAIR ( findable accessible interoperable and reusable data approach .]). Useful genetic data on patients is often available. With the management of DNA data, there is no need to re-sequence them for scientific research on personalized medicine.
Patients are hooked
What will the work guide give? Science, health care and patients will soon be closer together, making possible better tailored treatment. Swertz and its project group expect the work guide to be widely applied in practice. All professional groups and academic centers involved participate. Patients have also been connected, including through VSOP, the umbrella organization for rare and genetic diseases
The research program Personalized Medicine of the ZonMw program Good Use Medication works at the effective implementation of genome sequencing in Dutch Health Care, so that results can reach the patient more quickly. The spearheads are cancer and rare diseases. The program also deals with ethical and legal issues ( ELSI : Ethical, Legal and Social Implications). The gap analysis was carried out by Dr. Jeroen Beliën (UMC of Amsterdam) and Anke Kip (Lygature), as well as by Professor Morris Swertz (UMCG).
Source: UMCG
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