The following description is an outline of ideas concerning the establishment of an on line repository of information related to the diagnosis and management of conditions that affect the fetus. It is the purpose of this endeavor to provide assistance to those who perform prenatal diagnosis and to the parents of fetuses possibly affected by problems.
The guiding principles will be:
scientific integrity; so that the information can be trust,
usefulness to the patients and those providing their care
easy access (no subscription no "sign in", no fees); so that those who need the information can access it unrestricted,
openness; so that the information will be able to flow unencumbered by the obstacles of previous media.
Fetal Medicine is a field dedicated to the study of fetal development, congenital abnormalities and disease processes that may pose a threat to the fetus. It evolved tremendously in the past 20 years because of advancements in instrumentation allowing access to the intrauterine environment (ultrasonography, embryoscopy, fetoscopy, chorionic villus sampling, amniocentesis, cordocentesis and fetal surgery), developments in genetics and a better understanding of maternal diseases that may affect the pregnancy and the fetus.
A great deal of research is conducted in this area and published in peer-reviewed journals. Research results are often conflicting and a consensus difficult to be grasped by the clinician. Textbooks, on the other hand, are available but become outdated soon, as a result of the ever-evolving research efforts, technology and procedures added to the lack of consensus among experts.
While the demand for professionals in this area increases in the world, few centers are qualified to provide adequate training and certification. Even if high standard training is provided, when the professional returns back to clinical practice it is difficult to keep up with the information being generated.
Our objective is to create a site dedicated to fetal medicine imaging. All aspects would be covered: genetics, fetal development, prenatal screening, ultrasonography, fetoscopy, fetal surgery and maternal diseases or conditions that may affect the fetus. Information will be available on line in text, images, videos and possibly even scheduled debates and conferences. The site will be supervised by a panel of world experts in the field, in order to assure the quality of the information delivered.
On line journal dedicated to case reports of prenatal diagnoses of rare conditions
TheFetus.net is a journal on prenatal diagnosis of congenital anomalies. The journal was a bimonthly publication available to subscribers only, published from 1991 through 1994. It specialized in full length case reports of rare conditions, so that all interesting and rare cases diagnosed or observed prenatally, that were not well considered in conventional journals, had all the space, color and illustrations they wanted in TheFetus.net. Case-reports are the poor children of the medical literature and for good reasons: the rarer the case, the less likely the readers will be interested and Editors are often leery of allotting space. Yet for the practitioner the rational is just the reverse: if indeed no one wants to read all the possible case reports, it is very important to have easy access to a thorough review and discussion when confronted with a patient suspected of having such an anomaly. In the current system it is difficult to obtain original copies of an article and for medical imaging, the faxed copy or the PDF of an article is rarely of sufficient quality to compare the images with those on hand.
The editorial board will be composed of experienced authors (each already reviewer for conventional journals, and author of conventional textbooks). Usual peer review process will be applied. Respect of patient"s privacy and codes of ethics would be enforced as in other good journals.
The very structured form of the case-report make it easy to retrieve the appropriate information. The case will contain images, static and video.
The advantages of an on-line version are:
Concentration in one place of articles that are now disseminated in hundreds of journals where they have little impact. For instance the task of recognizing what could be the differential diagnosis of a hypoechoic but not cystic mass in an 18-week fetal abdomen is difficult in the current system. The on line version allows for keyword searches.
Easier access for reader: the computerized access would allow easy searches, and readers could download the whole article if they wish to keep a copy on their side.
Much cheaper, thus more available for physicians in less privileged countries who suffer from the vagaries of the postal systems.
Patients could have access to it
Video clip can be included which would be more informative than the static images in particular for cardiac conditions.
Subscribers could be made aware of new cases when posted.
No press or printing deadlines
The dynamics of publication may change somehow from the printed version because of the nature of INTERNET sites, which are dynamic. We envision that cases will be published and updated much faster than what is currently possible with printed journals after going through peer review.
The accumulation of cases, articles and reviews will progressively built an online reference source.
1. The Gallery
When an article has covered a subject, subsequent authors could either provide improved/updated manuscripts or simply add images to a gallery that would be appended to case reports. For instance if a case of fetal aortic aneurysm is published, it is unlikely, if the article is thorough and well researched, that a subsequent submission on such a rare case will add much to the discussion. Yet knowing the evolution and management outcome of subsequent cases would be very valuable. This information does not find its way in conventional journals. Further, from our discussions with many course participants, it is clear that many practitioners have very interesting cases and although they may not have the inclination to write a whole case-report a short version and images could contribute to the gallery.
2. Case of the Week
A Case of the Week will be presented. Visitors will be invited to try to solve these cases and, every other week, the answer to the case will be presented and discussed with the author and an additional expert if pertinent. Transcripts of these sessions will be permanently available for posterior consultation.
3. Help solve the case
An on line journal could also provide a place for submission of cases for advises. This would be equivalent to the corridor consults that happen in hospital or the phone calls to various colleagues, but with a much wider audience.
4. An area dedicated to genetics applied to fetal medicine.
In this area will be presented current concepts of genetics applied to common conditions that affect the fetus. All case reports and conditions published in the textbook area will be linked to this area for support.
A dedicated editor will be responsible for this area and the further developments of this part of the site.
5. An area dedicated to advances in fetal therapy and alternative diagnostic procedures
This area will be a very dynamic area of the site and we assume will have a lot of consultation. It is also the most sensitive part of fetal medicine, as therapeutic procedures on the fetus, in particular surgical, are under constant investigation. A dedicated editor in the field will be responsible for this part of the site, and we will invite Dr. Ruben Quintero for the task.
6. An area dedicated to evaluation of fetal well-being
In this area, topics such as Doppler velocimetry, biophysical profile and alternative tests for fetal well being evaluation will be discussed. This is also an area filled with controversies, that may benefit from INTERNET technology, since consensus meetings among experts located everywhere in the globe could be held and reports generated to clinicians.
7. An area dedicated to maternal conditions that may affect the fetus
This area will be dedicated to publication and discussion of articles, consensus, forums and conferences on issues like preterm labor, premature rupture of membranes, preeclampsia, infectious diseases, diabetes, isoimmunization, etc.
8. How can you help?
Editorial assistance (reviewing manuscripts), providing interesting "Cases of the Week" or case report will be greatly appreciated. Sources of funding will also be very much appreciated.
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