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Disease-specific clinical trials networks: the example of cystic fibrosis.

De Boeck K, Bulteel V, Fajac I.

Eur J Pediatr. 2016 Jun;175(6):817-24. doi: 10.1007/s00431-016-2712-z. Epub 2016 Mar 15.


Guideline on the design and conduct of cystic fibrosis clinical trials: the European Cystic Fibrosis Society-Clinical Trials Network (ECFS-CTN).

De Boeck K, Bulteel V, Tiddens H, Wagner T, Fajac I, Conway S, Dufour F, Smyth AR, Lee T, Sermet I, Kassai B, Elborn S; ECFS-CTN network partners.

J Cyst Fibros. 2011 Jun;10 Suppl 2:S67-74. doi: 10.1016/S1569-1993(11)60010-6.


The cystic fibrosis therapeutics development network (CF TDN): a paradigm of a clinical trials network for genetic and orphan diseases.

Goss CH, Mayer-Hamblett N, Kronmal RA, Ramsey BW.

Adv Drug Deliv Rev. 2002 Dec 5;54(11):1505-28. Review.


Clinical trials in cystic fibrosis.

Döring G, Elborn JS, Johannesson M, de Jonge H, Griese M, Smyth A, Heijerman H; Consensus Study Group.

J Cyst Fibros. 2007 Apr;6(2):85-99. Review.


Is the raised volume rapid thoracic compression technique ready for use in clinical trials in infants with cystic fibrosis?

Matecki S, Kent L, de Boeck K, Le Bourgeois M, Zielen S, Braggion C, Arets HG, Bradley J, Davis S, Sermet I, Reix P; respiratory function group of the European Cystic Fibrosis Society Clinical Trial Network.

J Cyst Fibros. 2016 Jan;15(1):10-20. doi: 10.1016/j.jcf.2015.03.015. Epub 2015 Apr 15. Review.


Measuring health-related quality of life in clinical trials in cystic fibrosis.

Abbott J, Hart A, Havermans T, Matossian A, Goldbeck L, Barreto C, Bergsten-Brucefors A, Besier T, Catastini P, Lupi F, Staab D.

J Cyst Fibros. 2011 Jun;10 Suppl 2:S82-5. doi: 10.1016/S1569-1993(11)60013-1.


Progress in cystic fibrosis and the CF Therapeutics Development Network.

Rowe SM, Borowitz DS, Burns JL, Clancy JP, Donaldson SH, Retsch-Bogart G, Sagel SD, Ramsey BW.

Thorax. 2012 Oct;67(10):882-90. doi: 10.1136/thoraxjnl-2012-202550.


Gene therapy for cystic fibrosis in humans by liposome-mediated DNA transfer: the production of resources and the regulatory process.

Caplen NJ, Gao X, Hayes P, Elaswarapu R, Fisher G, Kinrade E, Chakera A, Schorr J, Hughes B, Dorin JR, et al.

Gene Ther. 1994 Mar;1(2):139-47. Review.


Cooperation is key, say neuromuscular-disease researchers.

Butcher J.

Lancet Neurol. 2007 Apr;6(4):298-9. No abstract available.


A pipeline of therapies for cystic fibrosis.

Ashlock MA, Beall RJ, Hamblett NM, Konstan MW, Penland CM, Ramsey BW, Van Dalfsen JM, Wetmore DR, Campbell PW 3rd.

Semin Respir Crit Care Med. 2009 Oct;30(5):611-26. doi: 10.1055/s-0029-1238919. Epub 2009 Sep 16.


European Cystic Fibrosis Society Standards of Care: Quality Management in cystic fibrosis.

Stern M, Bertrand DP, Bignamini E, Corey M, Dembski B, Goss CH, Pressler T, Rault G, Viviani L, Elborn JS, Castellani C.

J Cyst Fibros. 2014 May;13 Suppl 1:S43-59. doi: 10.1016/j.jcf.2014.03.011. Review.


Clinimetric properties of bronchoalveolar lavage inflammatory markers in cystic fibrosis.

Fayon M, Kent L, Bui S, Dupont L, Sermet I; European Cystic Fibrosis Society Clinical Trial Network Standardisation Committee.

Eur Respir J. 2014 Feb;43(2):610-26. doi: 10.1183/09031936.00017713. Epub 2013 Jul 11. Review.


Endpoints for clinical trials in young children with cystic fibrosis.

Davis SD, Brody AS, Emond MJ, Brumback LC, Rosenfeld M.

Proc Am Thorac Soc. 2007 Aug 1;4(4):418-30. Review.


Procedures and methods of benefit assessments for medicines in Germany.

Bekkering GE, Kleijnen J.

Eur J Health Econ. 2008 Nov;9 Suppl 1:5-29. doi: 10.1007/s10198-008-0122-5.


Health-related quality of life in cystic fibrosis.

Royce FH, Carl JC.

Curr Opin Pediatr. 2011 Oct;23(5):535-40. doi: 10.1097/MOP.0b013e32834a7829. Review.


EuroCareCF: working together to improve patient care and therapy development.

Sheppard DN.

J Cyst Fibros. 2011 Jun;10 Suppl 2:S1-4. doi: 10.1016/S1569-1993(11)00089-0. No abstract available.


Report of the European Respiratory Society/European Cystic Fibrosis Society task force on the care of adults with cystic fibrosis.

Elborn JS, Bell SC, Madge SL, Burgel PR, Castellani C, Conway S, De Rijcke K, Dembski B, Drevinek P, Heijerman HG, Innes JA, Lindblad A, Marshall B, Olesen HV, Reimann AL, Solé A, Viviani L, Wagner TO, Welte T, Blasi F.

Eur Respir J. 2016 Feb;47(2):420-8. doi: 10.1183/13993003.00592-2015. Epub 2015 Oct 9.


Developing new products in cystic fibrosis: needs and obstacles for activities of small and middle-sized companies.

Schlangen M, Reimann AL.

J Cyst Fibros. 2011 Jun;10 Suppl 2:S103-9. doi: 10.1016/S1569-1993(11)60015-5.

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