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Background: Skin cancer is one of the most common cancers in the world and yet non-melanoma skin cancer (NMSC) has been included for the first time in the world cancer Atlas (GLOBOCAN 2018). The reason for this delay is the non-uniform data collection system for skin cancer across the countries. Germany is one of the 10 countries with the highest incidence of skin cancer reported in the world. This rate is estimated based on data collected by the 16 population-based cancer registries in Germany. While Malignant melanoma (MM) is being reported since the 1960s in Germany, NMSC data always faced completion issues because of out-patient based treatment and an extremely large number of cases. The purpose of this study is to analyze the methodology of skin cancer incidence registration followed by the German cancer registries and to assess the quality of data of skin cancer and suggest improvements. Methodology: The information was extracted from annual reports of all the German cancer registries, from the website of Robert Koch Institute, the Manual of cancer registration, through a questionnaire sent via email to all the registries and relevant articles searched on PubMed. Comparison of the methodology with that of Nordic countries was done to suggest improvements. Results: Legislative laws for remuneration to NMSC notifications, changes in ICD coding, and not counting the multiple tumors, all affect the registration process of skin cancer and hence its reported incidence rate. Use of Mortality/ Incidence ratio as an assessment of completeness, implementation of national screening project, and the incomplete TNM staging information, directly or indirectly determine the quality of skin cancer data. This data is more complete for MM as compared to NMSC. All registries replied back to the survey and confirmed these findings. On the other hand, Nordic countries report BCC in a separate file and count multiple skin tumors. Conclusion: There is undoubtedly a huge gap in incidence reporting of skin cancer by the German ...

The acceptance by a large number of state governments of medical marijuana dispensaries and the regulatory framework to support their licensing has put to one side the issue of monitoring and reporting outcomes. This is a major oversight. It is an untenable situation given the limited evidence base for the clinical benefits and risks associated with dispensed botanical marijuana. The purpose of this commentary is to propose that, as a condition of licensing, marijuana dispensaries should be required to establish a registry to support ongoing monitoring of patient response associated with botanical cannabis formulations. Patients should be monitored over the course of their treatment to assess, in the case of severe non-cancer pain as an example, pain intensity and functional status by pain location. The dispensary, in meeting required audit standards, should be in a position to report on patient response over baseline to the provider who has recommended botanical cannabis. As well, registries should be in a position to report to state licensing agencies response to therapy by target patient groups. Establishing site-specific registries should go some way to meeting the present evidence deficit for botanical marijuana, reducing barriers to its acceptance by providers, patients and health agencies. Article Type: Commentary

The acceptance by a large number of state governments of medical marijuana dispensaries and the regulatory framework to support their licensing has put to one side the issue of monitoring and reporting outcomes. This is a major oversight. It is an untenable situation given the limited evidence base for the clinical benefits and risks associated with dispensed botanical marijuana. The purpose of this commentary is to propose that, as a condition of licensing, marijuana dispensaries should be required to establish a registry to support ongoing monitoring of patient response associated with botanical cannabis formulations. Patients should be monitored over the course of their treatment to assess, in the case of severe non-cancer pain as an example, pain intensity and functional status by pain location. The dispensary, in meeting required audit standards, should be in a position to report on patient response over baseline to the provider who has recommended botanical cannabis. As well, registries should be in a position to report to state licensing agencies response to therapy by target patient groups. Establishing site-specific registries should go some way to meeting the present evidence deficit for botanical marijuana, reducing barriers to its acceptance by providers, patients and health agencies.

Context: The prevalence of Multiple Sclerosis (MS) in the world has grown and has attracted particular attention on the international level and governments, has considered prevention interventions and managing the symptoms of the disease to reduce the economic burden and has improved the quality of life of these patients necessary. One of the most important strategies in this field is MS population-based registry. Accordingly, this study was designed to identify the components of MS population-based registries within the developed countries.Evidence Acquisition: The present study is a review article that was conducted in 2018. The population of the study consisted of MS population-based registry systems of developed countries such as USA, France, and Denmark. Based on the combination of related keywords, about 60 papers appropriately and after extraction, categorization and integration were formulated in the form of proper sequence for the purpose of the study.Results: The main components of MS population-based registries in developed countries included registry goals, information resources, Minimum Data Sets (MDS), types of processes, types of reports, quality control measures, data transmission time limits, responsible for recording and collecting data, responsible organization and executor, data transmission method and the privacy practicesConclusion: With regard to the results, it is suggested that the developing countries must consider creating an MS population-based registry as a national program due to their health system and the MS population-based registries structure in developed countries, so that they can adopt a suitable strategy for preventing and controlling the disease.

Introduzione. Nel 2004 tutte le riviste del International Committee of Medical Journal Editors hanno concordato di adottare una politica di registrazione dei trial come parziale soluzione al problema del publication bias. Molte agenzie governative (UK DOH, CIHR, AIFA, ecc) hanno favorito lo sviluppo di registri di protocolli di trial clinici e li supportano finanziariamente. Malgrado questo interesse poco si sa riguardo al tipo ed alla completezza delle informazioni contenute nei registri dei trial. I nostri obiettivi sono: i) determinare il tipo di informazioni contenute nei registri dei protocolli dei trial; ii) valutare la qualità delle informazioni; iii) confrontare i registri per informazioni contenute e iv) identificare una struttura ottimale dei dati. Materiali e metodi. Nel 2005 abbiamo effettuato uno studio che prevedeva il campionamento randomizzato di protocolli di trial da tre registri internazionali, ClinicalTrials. gov, NCI's PDQ Database e ISRCTN Register. Sono stati inclusi tutti i trial senza esclusioni relativamente a malattia, condizione medica o problematica del servizio sanitario, stato di avanzamento del trial, disegno di studio. I protocolli sono stati valutati attraverso una checklist di 30 item desiderabili raggruppati in 5 categorie: informazioni identificative, dettagli clinici, finanziamento, informazioni per contattare gli investigatori e form di raccolta dati. Risultati. È stato effettuato un pilota su 45 record (15 da ogni registro). La qualità delle informazioni contenute era generalmente bassa (mediana: 16 item presenti; range: 10-22 per record)e variava considerevolmente tra registri. ClinicalTrial.gov (mediana 17) e NCIPDQ (mediana 18) contenevano più informazioni rispetto a ISRTCN (mediana 13) (ClinicalTrial.gov vs. NCIPDQ p=0. 79; ClinicalTrial.gov vs. ISRTCN p<0. 001; NCIPDQ vs. ISRTCN p<0. 001). In particolare i record erano poveri di informazioni riguardanti i dettagli clinici (item: outcome primario; date di inizio e termine dell'arruolamento) e informazioni di contatto (item: indirizzo completo; fax). Nessuno dei protocolli forniva copie dei form di raccolta dati. Al momento è in corso l'analisi di 600 nuovi record campionati casualmente dalle seguenti 5 tipologie di registri: internazionali, industria farmaceutica, nazionali (tra cui l'Osservatorio Nazionale per la Sperimentazione sui Medicinali), di specialità e di singole istituzioni. Conclusioni. Malgrado i criteri di desiderabilità inclusi nella checklist non fossero particolarmente stringenti, i risultati preliminari mostrano una considerevole variabilità nel tipo di dati disponibili nei registri dei protocolli dei trial e una qualità delle informazioni non soddisfacente. I risultati suggeriscono che vi sia la necessità di aumentare la standardizzazione del tipo di dati raccolti per migliorare un informazione che costituisce un bene pubblico essenziale.

Maestro nel creare consenso, mantenendo in precario ma efficace equilibrio le componenti istituzionali e sociali di una realtà complessa, Francesco Sforza, divenuto duca di Milano (1450), portò a compimento la riforma ospedaliera intrapresa dai suoi predecessori e inaugurò la compilazione sistematica dei Registri dei morti, capillare strumento di monitoraggio dello stato di salute della popolazione delle città del dominio, utile all'epoca per inaugurare politiche sanitarie ed economiche mirate, e oggi straordinaria fonte nello studio dei fenomeni demografici e sociali, quali povertà ed emarginazione, spesso sfuggenti in epoca pre-statistica. ; In the mid-Fifteenth Century, Francesco Sforza, become new Duke of Milan, carried out hospital reform and introduce the systematic compilation of the Registry of deaths. This Registry reflects the will of the ducal government to check population mortality and morbidity and suspicious or traumatic deaths in one of the most important cities in Europe, not only for healthcare reasons but also to supervise and to defend the economic value of human capital of the duchy. Today these records open up a significant breakthrough on the causes of individual deaths of marginalized classes of the society, often forgotten by ancient sources.

In a previous commentary in INNOVATIONS in pharmacy, the question was raised as to the questions legislators should ask for the licensing of medical marijuana dispensaries. The case was made that if dispensaries accept they have a duty of care then they should be required to monitor patients over the course of their treatment with botanical cannabis, including hemp based product, to evaluate the response of patients to therapy. One option would be for individual dispensaries (or owners of multiple licenses and dispensary locations) to adopt a registry format and implement an on-line reporting system by registry staff and patients for the conditions being treated. Unfortunately, under present legislative rules for dispensaries there is no incentive for dispensaries to make the necessary investment. It is also unlikely that legislators would be prepared to mandate a registry requirement. The purpose of this commentary is to offer an alternative solution. Rather than dispensary specific registries, a state-wide low cost registry is proposed where dispensaries are required to log in and track patients with specific conditions. In the case of severe pain, a dispensary would log in patients presenting with this condition and the patient tracked over their course of treatment. A further advantage with a statewide registry is that if a patient visits a different dispensary they can still be tracked as they would be identified by their marijuana card number. The ability to track patients by condition, while still resident in a state, would not only minimize the issue of incomplete records, but would provide a comprehensive, research quality framework for evaluating claims for botanical cannabis. This could then provide feedback to legislators and establish a robust basis for rule making.

In a previous commentary in INNOVATIONS in pharmacy, the question was raised as to the questions legislators should ask for the licensing of medical marijuana dispensaries. The case was made that if dispensaries accept they have a duty of care then they should be required to monitor patients over the course of their treatment with botanical cannabis, including hemp based product, to evaluate the response of patients to therapy. One option would be for individual dispensaries (or owners of multiple licenses and dispensary locations) to adopt a registry format and implement an on-line reporting system by registry staff and patients for the conditions being treated. Unfortunately, under present legislative rules for dispensaries there is no incentive for dispensaries to make the necessary investment. It is also unlikely that legislators would be prepared to mandate a registry requirement. The purpose of this commentary is to offer an alternative solution. Rather than dispensary specific registries, a state-wide low cost registry is proposed where dispensaries are required to log in and track patients with specific conditions. In the case of severe pain, a dispensary would log in patients presenting with this condition and the patient tracked over their course of treatment. A further advantage with a statewide registry is that if a patient visits a different dispensary they can still be tracked as they would be identified by their marijuana card number. The ability to track patients by condition, while still resident in a state, would not only minimize the issue of incomplete records, but would provide a comprehensive, research quality framework for evaluating claims for botanical cannabis. This could then provide feedback to legislators and establish a robust basis for rule making. Article Type: Commentary

PURPOSE: Worldwide, Indigenous people often have disproportionally worse health and lower life expectancy than their non-Indigenous counterparts. Despite the impact of cancer on life expectancy, little is known about the burden of cancer for Indigenous people primarily because of the paucity of data. We investigated the collection and reporting of Indigenous status information among a global sample of population-based cancer registries (PBCRs). PARTICIPANTS AND METHODS: An online survey was e-mailed to eligible registries using set inclusion criteria. Respondents were asked questions on the collection, reporting, and quality assessment of Indigenous status in their registers. RESULTS: Eighty-three PBCRs from 25 countries were included. Of these, 66% reported that their registry collected Indigenous status data, although the quality of this variable had been assessed in less than half in terms of completeness (38%) and accuracy (47%). Two thirds of PBCRs who collected Indigenous status data (67%), from nine of 25 countries responded that cancer statistics for Indigenous people were reported using registry data. Key barriers to the collection of Indigenous status information included the lack of data collection at the point of care (79%), lack of transfer of Indigenous status to the cancer registry (46%), inadequate information systems (43%), and legislative limitations (32%). Important variations existed among world regions, although the lack of Indigenous status data collection at the point of care was commonly reported across all regions. CONCLUSION: High-quality data collection is lacking for Indigenous peoples in many countries. To ensure the design and implementation of cancer control activities required to reduce disparities for Indigenous populations, health information systems, including cancer registries, need to be strengthened, and this must be done in dialogue with Indigenous leaders.

Sex offender registries (SORs) were established due to policies and practices intended to protect the public from individuals who commit sexually violent acts, and yet the empirical literature does not show that public SORs reduce or prevent sexual crimes. Given that politicians prominently influence SOR policies, the current study explores the views of SORs by 26 political decision-makers from Canada and the United States. Participants completed a survey on their opinions regarding SORs and their knowledge of SOR eligibility. Attitudes and political perspectives were assessed to examine their association with SOR opinions. Almost two thirds of those surveyed believed SORs should be publicly available, and one third believed SORs helped to protect the public. These beliefs were associated with those with conservative-leaning political views. These findings help us to explore the perspectives of political decision-makers and gain insight into attitudinal factors that may play a role in influencing opinions regarding SORs.