Neoplasms

All Conditions

Rare Diseases

Neuroendocrine Tumors

Carcinoid Tumor

Neuroectodermal Tumors

Neuroectodermal Tumors, Primitive

Neoplasms, Germ Cell and Embryonal

Neoplasms by Histologic Type

Neoplasms, Nerve Tissue

Adenocarcinoma

Carcinoma

Neoplasms, Glandular and Epithelial

Neuroendocrine Tumor

Neuroepithelioma

Patients with a histologically confirmed diagnosis of a neuroendocrine tumor irrespective of primary tumor location

Alexander Siebenhuener, MD

Emanuel Christ, MD, PhD

Attila Kollàr, MD

Aurel Perren, MD

Gastroentero-pancreatic neuroendocrine tumours (GEP-NETs) are regarded as a fairly rare disease. They are derived from the neuroendocrine system of the gastrointestinal tract and the pancreas and share common clinical features. So far, there is still uncertainty about the cell biology and mechanistic regulation of these tumours. Therefore targeted treatment is limited and management challenging. Treatment options include surgery, medical and ablative therapy, and more recently peptide-receptor radionuclide therapy. In order to better understand the characteristics of GEP-NETs and to evaluate treatment strategies, the SwissNET registry aims at the collection of data from patients presenting with a GEP-NET in Switzerland. Data will be entered prospectively and anonymized in a specifically designed database after the patient has given informed consent. All hospitals and general practitioners are invited to report on patients with a GEP-NET diagnosis and to participate to the registry. Data will be evaluated within regular time frames, focussing on types of GEP-NETs, treatment modalities and patient outcomes (e.g. mortality, hospitalisation rate), thereby contributing to the better understanding of these tumours.

Background

Gastroentero-pancreatic neuroendocrine tumours (GEP-NETs) are generally classified as rare diseases. Little is known about their cell biology and their mechanistic regulation. During the last years, the incidence of GEP-NETs is continuously increasing worldwide. In parallel, novel treatment options are currently evaluated which may substantially improve prognosis of patients with NETs. Data on such tumours in Switzerland, however, is scarce and treatment strategies vary throughout the country.

Objective

To systematically and prospectively collect clinical information of patients with GEP-NETs in Switzerland based on a histologically confirmed diagnosis.

Methods

All NETs of both, gastrointestinal and pulmonary origin are included provided that patients have given informed consent. Data will be entered prospectively and anonymised in a specifically designed database. Contributing centres and general practitioners are visited by a study nurse, patient files are analysed and data is transferred to the database. In case of conflicting evidence, questions are resolved in collaboration with a review board of SwissNET. Evaluation of treatment modalities and patient outcomes (e.g. mortality, hospitalisation rate) will take place within regular time frames.

SwissNET - a Registry for Neuroendocrine Tumours in Switzerland

SwissNET - a Prospective Registry of Patients With Neuroendocrine Tumours in Switzerland

Cantonal Hospital of St. Gallen

University Hospital, Basel, Switzerland

University Hospital, Geneva

University of Lausanne Hospitals

University Hospital, Zürich

Triemlispital Zurich

Spitalnetz Bern

Ente Ospedaliero Cantonale, Bellinzona

Luzerner Kantonsspital

Kantonsspital Liestal

Kantonsspital Graubuenden

Spital Limmattal Schlieren

Waid City Hospital, Zurich

Spital STS AG

Insel Gruppe AG, University Hospital Bern

Digestive System Diseases

Colorectal Neoplasms

Intestinal Neoplasms

Gastrointestinal Neoplasms

Digestive System Neoplasms

Gastrointestinal Diseases

Colonic Diseases

Intestinal Diseases

Rectal Diseases

Muhittin Yaprak

The study will examine the validity and reliability of the Mediterranean Colorectal Cancer Registry. Aspects of the analysis will cover parallel forms reliability, test-retest reliability, split half internal consistency and face validity of the Mediterranean Colorectal Cancer Registry.

Although central cancer registry programs have many benefits (the determination of national cancer incidences, strategic planning of health care systems etc.) data entry in such programs is often collected in restricted variables and physicians participating in the registration process may not be able to interact with each other during the management of their patients. For these reasons, a complete record in national general cancer registries can only be established retrospectively and the direct contribution to patient-specific diagnosis / treatment is limited. On the other hand, local registries have many advantages like easy integration of the data into the hospital electronic systems and multidisciplinary proactive enrollment.

Thus, characteristics of ongoing colorectal cancer registries (Swedish, South Australian, Oregon, Lublin, Ontario etc.) reported previously in the English medical literature are reviewed and an electronic form is tabulated for the Mediterranean Colorectal Cancer Registry. This study will examine the validity and reliability of this registry. Aspects of the analysis will cover construct validity, content validity, parallel forms reliability, test-retest reliability, split half internal consistency and face validity.

Reliability and Validity of Mediterranean Colorectal Cancer Registry

Construct validity will be based on the combination of qualitative and statistical methods in order to develop representative and structured set of multiple-choice items for colorectal cancer registry.

Content validity will be based on the combination of qualitative and statistical methods in order to develop shortest-possible but well-matched set of multiple-choice items reflecting the subjects being assessed in the colorectal cancer registry. .

Parallel forms reliability will be based on assessments analyzing the extent to which the items answered by different responders correlate with each other within their domain. It will be evaluated by correlation scores or positive predictive values according to the subject being assessed.

Test-retest reliability will be based on the reproducibility of the answers to multiple-choice items during a specific time period of stable condition. It will be evaluated by intraclass correlation coefficient or positive predictive values according to the subject being assessed.

Split half internal consistency will be based on the comparison of two sets of items inquirying the same subject. It will be evaluated by correlation scores or positive predictive values according to the subject being assessed.

Face validity will be based on the scores of respondents indicating their overall positive or negative impression after evaluating each item for every file they registered.

For negative responses, respondents will provide further feedback whether the item was ambiguous, confusing, excessively short, excessively long or there was another reason for their negative impression.

Volkan Doğru

Öğretim Görevlisi Doktor

Previous studies have estabished pesticide exposure as a possible risk factor for childhood cancer. The Agricultural Health Study (AHS), a prospective cohort study of pesticide exposure among 51,000 pesticide applicators in North Carolina and Iowa, provides an opportunity to study childhood cancer incidence and mortality among the children of pesticide applicators. Name and dates of birth for 21,985 children were previously provided by adult participants in the AHS. The current study seeks to identify cases of cancer among these children through record linkage to state cancer and death registries. Cancer incidence and mortality within the cohort will be compared with national data through standardized incidence and mortality ratios. A limited case-cohort comparison of pesticide exposures will also be performed. Approximately 44 cases of childhood cancer are expected to be identified. No follow-up or contact with cases is anticipated. It is anticipated that the study results will provide insight into the relationship of pesticide and other farm exposures to the pathogenesis of childhood cancer.

Incidence and Mortality of Childhood Cancer Among Children of Farmer Pesticide Applications

Incidence and Mortality of Childhood Cancer Among Children of Farmer Pesticide Applicators

National Institute of Environmental Health Sciences (NIEHS)

Study title	NCT ID	Conditions	Eligibility	Organization
SwissNET - a Registry for Neuroendocrine Tumours in Switzerland	NCT01039922	Neuroendocrine ... Carcinoid Tumor	-	Insel Gruppe AG, University Hospital Bern
SwissNET - a Registry for Neuroendocrine Tumours in Switzerland	NCT01039922	Neuroendocrine ... Carcinoid Tumor	-	Insel Gruppe AG, University Hospital Bern
Reliability and Validity of Mediterranean Colorectal Cancer Registry	NCT03864640	Registries	18 Years -	Akdeniz University
Reliability and Validity of Mediterranean Colorectal Cancer Registry	NCT03864640	Registries	18 Years -	Akdeniz University
Incidence and Mortality of Childhood Cancer Among Children of Farmer Pesticide Applications	NCT00339378	Pesticide Expos...	-	National Institutes of Health Clinical Center (CC)

Spots Global Cancer Trial Database for registries

Every month we try and update this database with for registries cancer trials from around the world to help patients and their families find trials that might be right for them.
We offer this 100% free of charge and do not endorse any of the trials listed here, we hope it helps you or a loved one.

Spots Global Cancer Trial Database for registries

Every month we try and update this database with for registries cancer trials from around the world to help patients and their families find trials that might be right for them. We offer this 100% free of charge and do not endorse any of the trials listed here, we hope it helps you or a loved one.

Every month we try and update this database with for registries cancer trials from around the world to help patients and their families find trials that might be right for them.
We offer this 100% free of charge and do not endorse any of the trials listed here, we hope it helps you or a loved one.