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Pediatric Pulmonology 49:938–940 (2014) Letters to the Editor Cystic Fibrosis Database (CFDB): A new web-based tool for cystic fibrosis specialists Roberto Buzzetti, MD, 1 * Natalia Cirilli, BSc (Hons), 2 Laura Minicucci, MD, 3 Valeria Raia, MD, 4 Donatello Salvatore, MD, 5 and Paolo Maffeis, MD 6 Summary. In order to help specialists involved in CF care and clinical research to know the current best evidence about clinical effectiveness of interventions in CF, we designed and developed a web-based, free access tool called “CFDB”—Cystic Fibrosis DataBase (www. inetflow.it/CFDB). The database was built by searching in Medline, Embase, Cochrane Library and worldwide trials registries all studies involving clinical interventions in CF. The tool lets the user define queries starting from one or more types of pathological conditions and one or more interventions. The output of the queries is structured in three levels: (1) how many and which studies deal with the conditions formulated in the query; (2) which are the main results of these studies; (3) a critical summary of the literature related to the query. This tool, providing a quick overview of the available evidence in clinical research in CF, may help clinical decision making, designing of new trials and building guidelines. Pediatr Pulmonol. 2014; 49:938–940. ß 2014 Wiley Periodicals, Inc. Key words: database; clinical trials; systematic reviews; cystic fibrosis. Funding source: Italian Cystic Fibrosis Foundation. INTRODUCTION AND OBJECTIVES Time limitation is one of the biggest obstacles to evidence-based practice but clinicians should seek evidence from as high in the appropriate hierarchy of evidence as possible. Moreover, clinicians need to be able to distinguish high from low quality in primary studies, systematic reviews, practice guidelines, and other integrative research focused on management recommen- dations. 1 Therefore, physicians and other health care professionals, involved either in cystic fibrosis care or in cystic fibrosis research, would greatly benefit from a specific Information-Technology tool, especially de- signed to give them, in a short timeframe, the state of the art of a clinical topic. All health care professionals and researchers need to know what studies can give them the proper answer to their questions, no matter if the question is which antibiotic to use for Pseudomonas infection, if glutathione can be useful for CF patients or what kind of therapy is best for a patient. Sometimes they can find a clear answer (intervention works—or the intervention will not work). It often happens that they remain uncertain though, as the studies conducted so far do not give a clear 1 Italian CF Research Foundation, Verona, Italy. 2 CF Centre, United Hospitals, Ancona, Italy. 3 CF Centre, Gaslini Hospital, Genova, Italy. 4 CF Centre, Federico II University, Naples, Italy. 5 CF Centre, Centro Pediatrico Bambino Gesu ` Basilicata, San Carlo Hospital, Potenza, Italy. 6 Inetflow Service SRL, Bergamo, Italy. Conflict of interest: None. Correspondence to: Roberto Buzzetti, MD, Fondazione Ricerca Fibrosi Cistica, Ospedale Maggiore,P.le Stefani 1, 37126 Verona, Italy. E-mail [email protected] Revised 30 September 2013; Accepted 7 October 2013. DOI 10.1002/ppul.22954 Published online 16 February 2014 in Wiley Online Library (wileyonlinelibrary.com). ß 2014 Wiley Periodicals, Inc.

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Page 1: Cystic Fibrosis Database (CFDB): A new web-based tool for cystic fibrosis specialists

Pediatric Pulmonology 49:938–940 (2014)

Letters to the Editor

Cystic Fibrosis Database (CFDB):A new web-based tool for cystic fibrosis specialists

Roberto Buzzetti, MD,1* Natalia Cirilli, BSc (Hons),2 Laura Minicucci, MD,3 Valeria Raia, MD,4

Donatello Salvatore, MD,5 and Paolo Maffeis, MD6

Summary. In order to help specialists involved in CF care and clinical research to know the

current best evidence about clinical effectiveness of interventions in CF, we designed and

developed a web-based, free access tool called “CFDB”—Cystic Fibrosis DataBase (www.

inetflow.it/CFDB). The databasewas built by searching inMedline, Embase, CochraneLibrary and

worldwide trials registries all studies involving clinical interventions in CF. The tool lets the user

define queries starting from one or more types of pathological conditions and one or more

interventions. The output of the queries is structured in three levels: (1) how many and which

studies deal with the conditions formulated in the query; (2) which are the main results of these

studies; (3) a critical summary of the literature related to the query. This tool, providing a quick

overview of the available evidence in clinical research in CF, may help clinical decision making,

designing of new trials and building guidelines. Pediatr Pulmonol. 2014; 49:938–940.

� 2014 Wiley Periodicals, Inc.

Key words: database; clinical trials; systematic reviews; cystic fibrosis.

Funding source: Italian Cystic Fibrosis Foundation.

INTRODUCTION AND OBJECTIVES

Time limitation is one of the biggest obstacles toevidence-based practice but clinicians should seekevidence from as high in the appropriate hierarchy ofevidence as possible. Moreover, clinicians need to be ableto distinguish high from low quality in primary studies,systematic reviews, practice guidelines, and otherintegrative research focused on management recommen-dations.1 Therefore, physicians and other health careprofessionals, involved either in cystic fibrosis care or incystic fibrosis research, would greatly benefit from aspecific Information-Technology tool, especially de-signed to give them, in a short timeframe, the state ofthe art of a clinical topic. All health care professionals andresearchers need to know what studies can give them theproper answer to their questions, no matter if the questionis which antibiotic to use for Pseudomonas infection, ifglutathione can be useful for CF patients or what kind oftherapy is best for a patient. Sometimes they can find aclear answer (intervention works—or the interventionwill not work). It often happens that they remain uncertainthough, as the studies conducted so far do not give a clear

1Italian CF Research Foundation, Verona, Italy.

2CF Centre, United Hospitals, Ancona, Italy.

3CF Centre, Gaslini Hospital, Genova, Italy.

4CF Centre, Federico II University, Naples, Italy.

5CF Centre, Centro Pediatrico Bambino Gesu Basilicata, San Carlo

Hospital, Potenza, Italy.

6Inetflow Service SRL, Bergamo, Italy.

Conflict of interest: None.

�Correspondence to: Roberto Buzzetti, MD, Fondazione Ricerca Fibrosi

Cistica, Ospedale Maggiore, P.le Stefani 1, 37126 Verona, Italy.

E-mail [email protected]

Revised 30 September 2013; Accepted 7 October 2013.

DOI 10.1002/ppul.22954

Published online 16 February 2014 in Wiley Online Library

(wileyonlinelibrary.com).

� 2014 Wiley Periodicals, Inc.

Page 2: Cystic Fibrosis Database (CFDB): A new web-based tool for cystic fibrosis specialists

answer, and further studies would be necessary. Mean-while, different entities have devoted themselves todeveloping Web tools for helping users quickly andefficiently search and retrieve relevant publications.These practices, have led to an increase in the numberand quality of various Web tools that provide literaturesearch service.2

The primary objective of this project was to helpspecialists involved in CF care and clinical research toknow the current best evidence about clinical effective-ness of interventions in CF. We have designed anddeveloped a web-based, free access tool called“CFDB”—Cystic Fibrosis DataBase (www.inetflow.it/CFDB) that could satisfy the clinical questions for CFhealth care professionals. In this short communication wedescribe this tool.

METHODS

Search of Studies

A project team of clinicians together with a leadingexpert in epidemiological and clinical research made asystematic search in Medline (http://www.ncbi.nlm.nih.gov/pubmed/), Embase (https://www.embase.com/), Co-chrane Library (http://www.thecochranelibrary.com/)[Cochrane Database Of Systematic Reviews (CDRS);Database Of Abstracts Of Reviews Of Effects (DARE);Cochrane Controlled Trials Register (CCTR/CEN-TRAL); Health Technology Assessment Database(HTA); NHS Economic Evaluation Database (NHSEED)], and in worldwide trials registries (http://www.clinicaltrials.gov/, https://www.clinicaltrialsregister.eu,http://apps.who.int/trialsearch/) using “cystic fibrosis”as a keyword or a title word, with no limit of time orlanguage.

Selection of Studies

Two independent reviewers (R.B. and N.C.) assessedstudies and trials for inclusion.The inclusion criteria were the following: primary

studies (interventional or observational, ended or ongo-ing) and secondary studies (systematic reviews, healthtechnology assessment reports) focusing on the effective-ness of interventions in CF. Ongoing studies from trialsregistries (only phase II, III RCTs, and phase IV studies)were also included.For the non-pharmacological interventions, also con-

trolled and observational studies (cohort studies, case–control studies) were included; for pharmacologicalinterventions and for ongoing trials only randomizedcontrolled studies were selected.Studies with patients other than CF, or having only few

CF patients, or without a control group, or focusing on

“basic science,” etiology, epidemiology, prognosis,guidelines were excluded.

Classification of Studies

Studies were classified according to an “ad hoc”dictionary of keywords. For systematic reviews thefollowing variables were analyzed: code, reference(year, title, authors, journal, and registry), interventions,

TABLE 1—The List of Topics (Level 3)

Abnormal glucose metabolism

ABPA

Active cycle of breathing technique

Agents which reduce gastric acidity

Antibiotic treatment of early Pseudomonas aeruginosa

Antibiotics for pulmonary exacerbations

Antioxidant supplementation

Azithromycin

Bisphosphonates

Bronchodilators

Calorie supplements

CFTR correctors—Potentiators

Chest physical therapy

Chronic rhinosinusitis

Dornase alpha

Exercise and physical training

Fibrosing colonopathy

Fungi

Gene therapy

General nutrition recommendations

Growth hormone

Hemoptysis

Hypertonic saline

Inhaled antibiotics

Inhaled corticosteroids

Liver diseases

Lung transplantation

Mycobacteria

MRSA Eradication

Nasal polyposis

Non-invasive ventilation

Non steroid anti-inflammatory drugs

O2 therapy

Omega-3—zinc probiotics

Oscillating devices

Osteoarthritis

Palivizumab for prophylaxis against respiratory syncytial virus

Pancreatic enzyme

Pancreatitis

Pneumothorax

Positive expiratory pressure

Prophylactic use of oral antistaphylococcal antibiotic

Psychological interventions

Scheduled IV antibiotics every 3–4 months—symptom-based

treatment

Screening

Systemic corticosteroids

Vaccination program

Vitamins A, E, K

Vitamin D

CFDB: A Web-Based Tool for CF 939

Pediatric Pulmonology

Page 3: Cystic Fibrosis Database (CFDB): A new web-based tool for cystic fibrosis specialists

number of included studies, outcome measures, mainresults and author’s conclusions.

Database Refinement and Update

If the results of a study had multiple publications onlyone version was retained and the same criteria wereadopted for studies submitted to more conferences. Whena conference abstract or an “ongoing trial” is subsequentlypublished as an article, it is deleted from the database andreplaced by the published paper. The database is regularlyupdated and revised to improve the quality of data.

Topics Summaries

Three CF specialists (L.M., V.R., and D.S.) wrote acritical updated summary of the results from the literature,for some relevant issues (see Table 1), including a briefbackground, what is known and what is needed to study.

RESULTS

To March 1, 2013 the database included 1,784 recordsas follows: 81 Cochrane reviews, of which 15 protocols,124 other reviews (including Health Technology Assess-ment reports and Economic Evaluations), 1,376 primarystudies (randomized and non-randomized, includingcongress abstracts), and 203 ongoing trials.A user-friendly web-based tool helps the user to define

queries starting from one or more types of pathologicalconditions (concerning CF) and one or more interven-tions. The output of the queries is generally on threelevels: how many and which studies (primary andsecondary, ended or in progress) deal with the conditionssubmitted in the query (level 1); which are the mainresults of clinical trials (level 2) and, for some relevanttopics, a brief critical updated summary of the resultsfrom the literature (level 3).To build a query, the user can select one or more terms

from five search menus:

1. Condition/Disease/Complication (e.g.: diabetes, preg-nancy, etc. CF is always implied).

2. General class of Intervention (pharmacological or non-pharmacological [e.g.: diagnosis, surgery, comple-mentary medicine, etc.])

3. Category of intervention (e.g.: antibacterial agents,artificial ventilation, etc.)

4. Specific Intervention (e.g.: Amikacin, Calcium, etc.)5. Mode of Administration (how the intervention is

administered).

Within each menu, the terms are in “OR”, and the usercan choose so many items as he wants; among menus theterms are in “AND.” Example: (Pseudomonas aeruginosaOR Burkholderia cepacia) AND (Tobramycin ANDInhalation/Nebulized).When the query is complete, by clicking on a “Search”

button the user can read the results and find the link to theoriginal publication. The user can also read, for all theselected studies, several details: date, criteria for inclusionin the review (or study design), participants, interven-tions, outcome measures, main results and authors’conclusions. An option “see also” allows to readsummaries about the main related topics.

DISCUSSION

This tool may help clinicians, researchers and studentsto have a fast updated view of clinical research in CF byperforming queries on the main topics in CF care. It couldalso be helpful to anyone who is going to design newstudies, as it provides a concise description of what iscurrently known and what issues, on the contrast, needadditional research.It may be of help to those who must make

recommendations (guidelines), providing a first quickoverview of the available evidence.We hope that the database, which was built with so

much effort (includes about 1,800 citations accuratelyclassified) and which is constantly kept up to date, willserve the largest possible number of users by providinga quick and comprehensive guide ripples that can helpprofessionals in the correct decisions.It would be desirable to enlarge the team members

with international experts to improve the quality of thecontents and the methodological analysis.

ACKNOWLEDGMENTS

This project was supported by an operating grant fromthe Italian Cystic Fibrosis Foundation.

REFERENCES

1. Guyatt GH, Haynes RB, Jaeschke RZ, Cook DJ, Green L, Naylor

CD, Wilson MC, Richardson WS. Users’ Guides to the Medical

Literature: XXV. Evidence-based medicine: principles for apply-

ing the Users’ Guides to patient care. Evidence-Based Medicine

Working Group. JAMA 2000;284:1290–1296.

2. Lu Z. PubMed and beyond: a survey of web tools for searching

biomedical literature. Database 2011; baq036.

940 Buzzetti et al.

Pediatric Pulmonology