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Completeness of data registration is checked at regular intervals in centers with accreditation by the Joint Accreditation Committee ISCT‐Europe (JACIE) & EBMT, Europe’s official accreditation body in the field of hematopoietic stem cell transplantation (HSCT) and cellular therapy, promoting high‐quality patient care and medical and laboratory practice through a profession‐led, voluntary accreditation scheme. Over 330 centers have been accredited at some point in time. Accreditation has been shown to be associated with improved outcome [32].

Informed consent for transplantation and data collection is obtained locally according to current regulations. Since 2003, all transplant centers are required to obtain written informed consent prior to data registration with the EBMT following the 1975 Helsinki Declaration.

Next to the MED‐A data with a restricted set of variables, MED‐B data, are collected by centers with the data management capacity to handle the burden of data management, a task with formidable challenges in a voluntary organization without remuneration for the data management effort. Data initiatives are sometimes used to increase data coverage in a particular disease or field of interest [33]. These data initiatives provide a tool in between routine data registration and specific cohort studies. Last, for some rare diseases, e.g. aplastic anemia, data on transplantation are supplemented by routine collection of data on alternative treatment such as immunosuppressive treatment approaches [34].

In addition to the registry, the EBMT annual activity survey [35] compiles trends of the use of transplant technology in Europe and neighboring countries. This provides data on transplant indications in a timely manner for member centers of the EBMT and nonmember centers. At the same time, activity survey data collected independently provides a source for checking completeness of reporting into the EBMT database. Information on almost 800,000 transplants has been accrued since 1990.

Benchmarking studies [36] are used to qualify the completeness of patient follow‐up across centers and to compare outcomes such as mortality among centers as a measure of patient selection and treatment quality.

Data from the registry are obviously among other things of major interest to describe outcomes of rare diseases [37] and even rare complications of rare diseases [38] and on impact of certain risk factors on early and long‐term outcome [39]. Data obtained through the registry provide a base to formulate guidelines and recommendations [40].

The Registry contains patient clinical data, including aspects of the diagnosis and disease, first‐line treatments, HSCT‐ or cell‐therapy‐associated procedures, transplant type, donor type, stem‐cell source, complications and outcome. Patients are followed up indefinitely. Basic donor information is included with these procedures and donor follow‐up data are entered. All Registry studies are performed under the supervision of one of the EBMT Working Parties.