Science topic
Registries - Science topic
The systems and processes involved in the establishment, support, management, and operation of registers, e.g., disease registers.
Questions related to Registries
Hi, all.
I would like to know, how do you analyise data from the national registry that collects data on some diseases and conditions?
In past, people used MS Access a lot. Is the R a proper solution nowadays? Or do you suggest some other tools? I am looking for tool that could provides outputs in spreadsheet.
The estimated sample size was 280 according to the population (registered pharmacist). Since I am going to use two diffrent prescriptions to evaluate their practice, will the sample be 280×2 or 280 ÷2 ?? Or is it calculate by another way?
According to article 31 of the Chicago Convention, the state must issue or render a certificate of airworthiness for aircraft in its state registry. Article 31 is included as one of the functions or duties transferred according to article 83 bis of the convention. Can states exclude article 31 on the duties being transferred in the agreement?
Population-based administrative data are routinely collected through the course of health care provision. Health care registries, by contrast, have certain inclusion criteria (e.g., births, cancer diagnoses, etc.) and typically contain more detailed information than 'purely' administrative (i.e., passively collected) data. However, some registries also contain routinely collected data that is also collected passively, which can be used for research and passive surveillance. Does this apply to the Medical Birth Registry of Norway?
I'm currently doing a meta-analysis of non randomized studies of intervention. the meta analysis aims to compare different treatments and I'm using Cochrane ROBINS-I to assess the risk of bias in these studies ..
for most of the studies the source of data is the registries or the electronic medical records. the problem is that the selection bias for this kind of studies is inevitable and in most of the studies it is not addressed or statistically adjusted for. this has resulted in most of the studies included in the MA to be classified as serious risk of bias. even though the study might adjust for confounding properly and address the bias in classification of interventions, but the selection bias is unavoidable anyway.
I'm thinking of modifying the judgment of risk of bias by addressing all types of biases except the selection bias (except for the immortal time bias and the inception bias when they are reported).
do you think this is appropriate since all studies inherently have the risk of selection bias?
Does anyone have information on national registries regarding cognitive or daily activity or general health limitations or diagnoses following Covid-19 infection?
Hi
dose any one have any experience in BioBrick cloning? new in the field and trying to find a registry of "AVAILABLE VECTORS", I am looking for vectors with Chloramphenicol resistance to be exact.
any help is really appreciated.
Is it possible to register the surveys questionnaires in any kind of registries so that its not duplicated.
I like to learn how researchers estimate cancer prevalence in a country? Searching online, I found a population-based registry recognized as the gold standard for this purpose.
However, the establishment of a population-based cancer registry is costly for LMIC countries.
I like to know any other study design preferred after a population-based registry to estimate certain cancer incidence/ prevalence in a country.
Thank you.
Indeed, there is a bidirectional relationship between Covid-19 and diabetes and since my interests have always been in the field of MetS and type 2 diabetes mellitus (T2DM) I pose this question and discussion over the weekend and hope that a robust discussion with thoughts ideas and new concepts can be of interest to our readers.
My thoughts are that there may be many people with MetS that encompass many of the co-morbidities such as Obesity (visceral obesity driving a chronic inflammatory condition), hyperlipidemia, hyperinsulinemia hyperamylinemia with both insulin and leptin resistance, hypertension and impaired blood glucose and of older age prior to
developing COVID-19 infection. These are not only co-morbidities but also part and partial of the major components of the MetS in which insulin resistance plays a central role.
Acute hyperglycemia may be present during the acute phase of the disease even if these co-morbidities are not present due to inflammation (toxic cytokine storm) in the pancreatic islets and the fact that ACE2 is present on Beta cells of healthy individuals. Also, inflammation and oxidative stress form a vicious cycle, i.e. one begets the other.
So as the disease improves and the patients get better the high glucose levels may resolve along with infection and in most cases, these situations would be the younger people who develop the infection.
However, those with the MetS with multiple co-morbidities may develop an ACCELERATION of the natural progression of the Natural history of T2DM due to not only the ACE2 being present on the beta cells but also on the endothelial cells (ECs) of the capillary blood supply to the islet that is associated with increased inflammation and oxidative stress. This would implicate Redox stress storm, cytokine storm and virion storm ( or viral load).
An excellent discussion of this topic was recently on Medscape as follows in this link:
Also the publication regarding the registry
Rubino F, Amiel SA, Zimmet P, et al. New-Onset Diabetes in Covid-19. N Engl J Med. 2020 Jun 12. doi: 10.1056/NEJMc2018688. Online ahead of print. just use the doi to read more about this registry.
Here is the website for this registry:
This question and discussion are now open to all who are interested in this topic and I am looking forward to any and all suggestions as to your thoughts concepts or ideas regarding this topic of interest. All of your interests will be appreciated.
Melvin R. Hayden, MD
nickname "pete" after my grandfather
e-mail mrh29pete@gmail.com if you would prefer to discuss on e-mail
I Hope all are well and staying safe during these international trying times. We are all one people! Makes me think of the song IMAGINE by john lennon - IMAGINE all of the people as one facing this SARS -CoV-2 viral pandemic so ... let the world be as ONE!
pete
Dear colleagues,
pre-registration is a key element in open science practice. There are several options on the market for pre-registering an intended research project. I wonder if there is a tendency towards a specific pre-registration platform for exercise science research. For sports psychology it seems to be OSF, but I could not identify a preference for exercise science studies.
What do you think is the most used pre-registration platform for exercise science research and/or which one would you recommend for this field of science?
Cheers
Lutz
I need to know that if clinical trials are been conducted by a collaborative Institute (not at our facility) and they already have the "Clinical trial registry (CTRI) number", can we use that same CTRI number for our HMSC approval?
To compare different treatment modalities in a particular disease, do we always have to start an RCT? If yes, then please suggest the initial procedures. I'm a total novice and I couldn't get help from my known seniors.
Greetings all!
Recently, I was reading a clinical trial paper that reported some follow up outcomes for only part of the full sample undergoing a trial. Within the paper, they referred to their Cliniclatrials.gov (CT.gov) NCT number , which was the registry for the full sample trial. When visiting the trial's NCT on CT.gov , I noticed that; at the "More information" section which should include the URL to any publication on this trial; the URL to the publication I was reading was not included.
Which had me thinking of the many times I assumed that a trial still has no publications when the "More information" section didn't have any URLs and the study results section was still empty.
Therefore, could anyone please elaborate how to 100% make sure whether a trial on Clinicaltrials. gov or the WHO ICTRP or the EU clinical trials registry , has a publication or not?
(Side note: I tried searching the NCT identifier on pubmed; and only one publication was found)
I would like to start a new study on measuring the disease burden of children in a tertiary care hospital. I will collect information from all admitted children in this hospital using a predefined Questionaire. In this regards, how I will calculate the sample size and show in the protocol.
Hi all,
I am currently in the process of writing up my report for a BMedSci on the quality of registries assessing pain.
Each participating registry has completed a questionnaire which included questions such as method of data collection and participant number.
I would like to calculate statistically whether there is an association between the number of participants (continuous) and method of data collection (paper, online or paper and online).
Would anyone be able to advise me on the correct statistical test to use for this comparison?
Thank you in advance
We are currently designing a nested case-control study based on retrospective registry healthcare data available over a 4-year period. We have identified all cases, and are now looking into the selection of controls.
We want to use incidence density or risk set sampling, so selected controls should still be eligible as controls for future cases, and can be selected twice or more.
How should we select controls exactly when selecting from a retrospective registry dataset? We believe that if we select a control for a case occurring at time x, we should add all registry data we have available for this control up to time x, and delete all registry data available for this control after x. However, this control should still be available as a control for a case occurring at time x+y. If we select this control again for another case at time x+y, should we just add all available registry between x and y data to that control's data in the dataset? Or should we end up with two separate rows in our dataset by duplicating the control, and add data up to time x for the first duplicate, and up to time y for the second duplicate?
We believe the former makes more sense but do not find guidance on this in the literature.
Any advice in this would be greatly appreciated!
Philippe
I could not register in any national clinical trial registry during my research on a area of Physiotherapeutic domain. so,please help me with any suitable journal to publish my study..
I have registered one clinical trial, now in publication i want to add one more outcome ( change in Lund-keneddy score) that was not reported in registry. Can i report that outcome ?
The number of orthopedic implants in use increases every year. So does the incidence of implant-associated infections, which is estimated to be >2% and very likely under-reported in the common registries. Careful soft-tissue management, antibiotics, early recognition and revision contribute to a better outcome. However, is this enough? Is there hope for more?
Does mind-numbing bureaucracy hinder the free flow of creative thought?
The necessity for ethical and procedural control is clear.
But have we outlived this method of control? Does our IT and global Internet capacity and connectedness give us other options?
Should we have a single global clearinghouse for research ethics approval, with one set of clear standards for all of Humanity?
Should we have one global plagiarism checker- one standard, open access?
Should we have one global Registry for research?
Should we have a global 'Ideas Bank' where people can register an idea- and be acknowledged for it?
I am looking for an app that can easily be accessed by users and without the need to open an account or profile to add people. Because some of the things that require a registry or account will make it hard for people to participate in the studies.
Great to learn that you have been supported to pilot a National Dementia Registry. Please can you share your protocol for this project?
The Software Defined Network SDN was designed to solve the challenges of the traditional networks by separating the architecture into two planes: data and control. Integrating the SDN concept with fog computing increases the performance of IoT. The SDN controller keep registry, and manages resources allocation to all IoT items.
I am trying to assess the capacity of clinical research sites and organizations in West Africa to conduct vaccine trials. I have designed a questionnaire, but i need to get a listing of these organizations with contact details. Online clinical trial registries have provided some details but they are very scanty. Also, it excludes those sites that have not been actively conducting or registering clinical trials online, but which, with a little push can be fully functional centers.
Can anybody PLEASE offer suggestions?
Hello,
From a registry, I wish to know the number of subjects necessary for the study.
The goal is to compare overall mortality between two groups, so I will do a comparison of mortality rates between the two groups.
However, I wonder if this calculation is appropriate because, finally, it is not a randomized trial but a cohort-type observational study. We do a measurement at the inclusion and we classify the patients in 2 groups then we look if they die more or less in one of the groups. I am not familiar with these studies or if the statistical methods are the same as for randomized trials.
Thanks for helping me.
I'm working on a 35bps regulatory part from the iGEM Registry of Standard Biological Parts. My band size should be exactly 35bps when run against a 50bps ladder. But it shows to be ~100bp. The PCR cycles (25) and extension time are optimized for this part. But on a 2% agarose gel I don't get my desired band size. Any idea whats gojng wrong?
Number and clinical outcome of affected patients
According to the introduction, the Emerging Markets Data Base (EMDB) provides information collected since 1975, as well as daily, weekly, monthly, quarterly, and yearly data on more than 2,200 stocks by company, industry, country, region, and more. However, I cannot find yearly data from EMDB. Does it mean my institution don't registry the database? If not, could you please inform me where I can download the related data? Thank you!
I want to register a meta-analysis about diagnostic accuracy in a different registry from PROSPERO.
We would like to use the GRACE RISK SCORE in our myocardial infarction registry. Does anybody knows the formula or has a syntax to compute the GRACE SCORE?
cystic fibrosis is increasing in our area and need to establish registry
I am currently writing a systematic review and the majority if not all my studies are descriptive. I looked for quality assessment tools and found out that the
QAT is widely used: http://www.nccmt.ca/registry/view/eng/14.html but it is somehow applicable to intervention rather than descriptive studies.
I also came across circum which seems appropriate but I haven't seen any review that used circum before http://circum.com/index.cgi?en:appr
Do you think I should be using QAT? what other tools would you suggest?
Thank you
Mohamad
Specifically, my review is a systematic review of the construct of financial well-being. It is systematic because I want to respect all the guidelines for systematic review (e.g. PRISMA) but my aim is not to evaluate an clinical intervention's efficacy but to synthesize how previous studies defined and operazionalized the construct of financial well-being.
Registries as PROSPERO or COCHRANE accept only reviews that have clinical outcomes.
Data from one of Europe’s largest independent liver transplant registries reveals improved graft survival benefit in patients receiving Advagraf™ prolonged release tacrolimus compared to those on tacrolimus immediate release.
Following the results of this study, will you change your practice by using Advagraf rather than the Prograf as induction immunosuppression in your liver transplant patients?
I manage a research participant registry. I have just come on board and the data from participant surveys has been being input by volunteers. I have checked the first 100 surveys for errors and have found around a 60% error rate (around 60% of the surveys have at least one entry error). I plan to double enter all of the current surveys at 100%. However, outside of more extensive volunteer training, I am looking for measures to ensure data integrity for the future surveys.
Research protocol registration improves the transparency of research as well as allows completeness of information from the publications that ensue. Being essential for interventional trials, there has been a move towards registration of observational studies as well.
I am planning to start a research registry, focussing essentially on observational studies in health care research.
What would be the expectations of a researcher/scholar from such a registry?
What qualities and attributes should I aim for and what are the potential problems that I am likely to encounter?
