,
Giancane, Gabriella
Swart, Joost F.
Castagnola, Elio
Groll, Andreas H.
Horneff, Gerd
Huppertz, Hans-Iko
Lovell, Daniel J.
Wolfs, Tom
Herlin, Troels
Dolezalova, Pavla
Sanner, Helga
Susic, Gordana
Sztajnbok, Flavio
Maritsi, Despoina
Constantin, Tamas
Vargova, Veronika
Sawhney, Sujata
Rygg, Marite
K. Oliveira, Sheila
Cattalini, Marco
Bovis, Francesca
Bagnasco, Francesca
Pistorio, Angela
Martini, Alberto
Wulffraat, Nico
Ruperto, Nicolino
Funding for this research was provided by:
Seventh Framework Programme (260353)
Article History
Received: 18 November 2019
Accepted: 27 March 2020
First Online: 7 April 2020
Ethics approval and consent to participate
: All registries and participating centers obtained approval from their respective ethics committee and obtained consent/assent based on national existing regulations.
: Not applicable
: GG declares that she has no competing interests.JFS has received sponsorship for a meeting by Sobi (< $10,000 USD).EC declares that he has no competing interests.AHG has received research grants from Gilead, Merck, Sharp & Dohme, and Pfizer; is or has been a consultant to Amplyx, Astellas, Basilea, F2G, Gilead, Merck, Sharp & Dohme, and Pfizer; and served at the speakers’ bureau of Astellas, Basilea, Gilead, Merck, Sharp & Dohme, Pfizer, and Schering-Plough. All of the above is < 10.000 per entity.GH has received consultancies, speaking fees, and honoraria from Abbvie, Chugai, Pfizer, Novartis, Roche, and Sanofi (< $10,000 USD each).HIH declares that he has no competing interests.DJL has served on speaker bureaus for Genentech and Bristol-Meyers Squibb and served on a data and safety monitoring boards for Forest Research and the NIH-NIAMS; the Cincinnati Children’s Hospital Medical Center has received consulting fees for the work of Dr. Lovell from AbbVie, AstraZeneca, Bristol-Myers Squibb, Centocor, Genentech, Hoffman-La Roche, Lilly, Janssen, Novartis, Pfizer, Regeneron, R-Pharm and UBC. Each activity is less than $10,000.TW declares that he has no competing interests.TH declares that he has no competing interests.PD has received speaker’s fees or consultancies or travel grants (all < 10,000 USD) from Medac, Novartis, Abbvie, Roche, SOBI, and Lilly.HS declares that she has no competing interests.GS has received honoraria as a sub-investigator in a Pfizer trial (> 10,000 USD).FS declares that he has no competing interests.DM declares that she has no competing interests.TC has received consultancies, speaking fees, and honoraria from Roche and Abbvie < $10,000.VV has received consultancies, speaking fees, and honoraria from Pfizer, Abbvie, and Sobi (< $10,000).SS declares that she has no competing interests.MR declares that she has no competing interests.SKO has received teaching honoraria from Pfizer (< $10,000).MC declares that he has no competing interests.FBo received teaching honoraria from Novartis (< $10,000) and consulting fees from Biogen (< $10,000).FBa declares that she has no competing interests.AP declares that she has no competing interests.AM: starting from 1 March 2016 to December 2018 Prof. Alberto Martini did not have any conflict of interest to declare since he was the Scientific Director of IRCCS Istituto Gaslini and this role did not allow him to render private consultancies resulting in personal income. He performed consultancy activities on behalf of the Gaslini Institute for the following companies: Abbvie, Biogen, Boehringer, Bristol-Myers and Squibb, EMD Serono, Janssen, Novartis, Pfizer, and R-Pharm. The money received for these activities was directly transferred to the Gaslini Institute’s bank account. Since January 2019, Prof. Alberto Martini is no longer the Scientific Director of IRCCS Istituto Gaslini; therefore, he can perform private consultancy services. Currently, he has active consultancy agreements with Janssen, Novartis, and Pfizer (< 10.000 USD each).NW has received an institutional research grant from AbbVie (> 10,000 USD) for an e-health project. Consultancies: BMS (< 10,000 USD) on e-health developments.NR has received honoraria for consultancies or speaker bureaus (< 10.000 USD each) from the following pharmaceutical companies in the past 3 years: Ablynx, AbbVie, Astrazeneca-Medimmune, Biogen, Boehringer, Bristol-Myers and Squibb, Eli-Lilly, EMD Serono, Glaxo Smith and Kline, Hoffmann-La Roche, Janssen, Merck, Novartis, Pfizer, R-Pharma, SanofiServier, Sinergie, Sobi, and Takeda. The Gaslini Hospital, where NR works as full-time public employee, has received contributions (> 10.000 USD each) from the following industries in the last 3 years: BMS, Eli-Lilly, GlaxoSmithKline, F Hoffmann-La Roche, Janssen, Novartis, Pfizer, and Sobi. This funding has been reinvested for the research activities of the hospital in a fully independent manner, without any commitment with third parties.