The Hunter Outcome Survey (HOS) is supported by Shire Human Genetic Therapies, Inc. (Shire HGT), which is responsible for maintaining the central database and for the conduct of statistical analyses. This manuscript was a Shire HGT initiative which was performed with the approval of the HOS advisory board. Editorial assistance was provided to the authors by Edward Weselcouch, PhD, of PharmaWrite, LLC (Princeton, NJ, USA) and Robin Smith, PhD, of The Curry Rockefeller Group, LLC (Tarrytown, NY, USA) and was paid for by Shire HGT. The authors would like to thank the Hunter syndrome patients and their families for their participation in HOS.
Disclosures
Gabriel M. Cohn, David A.H. Whiteman, and Isabelle Morin are employees of Shire Human Genetic Therapies, Inc.
The following physicians were managing patients enrolled in HOS at the time of this study:
Austria—Graz: Barbara Plecko; Salzburg: Olaf Bodamer
Belgium—Brussels: Linda De Meirleir
Brazil—Fortaleza: Erlane Ribeiro; Porto Alegre: Roberto Giugliani; Rio de Janeiro: Raquel Taveres Boy da Silva; Salvador: Angelina Acosta; São Paulo: Ana Martins
Bulgaria—Sofia: Radka Tincheva
Canada—Toronto: Joe Clarke; Vancouver: Lorne Clarke
Croatia—Zagreb: Ingeborg Barišić, Ivo Barić
Czech Republic—Prague: Jiri Zeman
Denmark—Copenhagen: Allan Meldgaard Lund
France—Lyon: Nathalie Guffon; Paris: Vassili Valayannopoulos, Bénédicte Héron
Germany—Mainz: Michael Beck, Gudrun Schulze Frenking; Hamburg: Nicole Muschol; Magdeburg: Silke Klose; Berlin: Julia Hennermann
Greece—Thessaloniki: Dimitrios Zafeiriou
Hungary—Budapest: Zsuzsanna Almássy
Ireland—Dublin: Eileen Treacy
Italy—Ancona: Orazio Gabrielli; Bari: Francesco Papadia; Bologna: Alessandro Cicognani; Genova: Maja Di Rocco; Monza: Rossella Parini; Padova: Maurizio Scarpa; Rome: Claudio Feliciani
Poland—Warsaw: Anna Tyliki-Szymanska
Portugal—Porto: Elisa Leao Teles, Esmeralda Martins; Lisbon: Ana Gaspar
Russia—Moscow: Peter Novikov
Spain—Badalona: Guillem Pintos; Badajoz: Enrique Galán; Barcelona: Mireia del Toro, Merce Pined; Bilbao: Luis Aldámiz; Las Palmas: Milagros Marti; Linares: Pilar Munguira; Madrid: Luis González; Murcia: Rosario Domingo; Ourense: Gemma Novoa; Palma de Mallorca: Begoña de Azua; Salamanca: Aránzazu Hernández; Seville: Dolores Lluach; Valencia: Jaime Dalmau; Valladolid: José Manuel Muro; Zaragoza: Carlos Alcalde, Antonio Baldellou, Juan Pérez
Sweden—Stockholm: Gunilla Malm, Ingrid Dahlman; Lund: Dominiki Papadopoulou; Halmstad: Nils Nilsson; Gothenburg: Niklas Darin
Taiwan—Taipei: Shuan-Pei Lin
The Netherlands—Rotterdam: Ans van der Ploeg
UK—Amersham: UK PMS Society; Birmingham: Chris Hendriksz; Cambridge: Uma Ramaswami; London: Ashok Vellodi; Manchester: Simon Jones, James Edmond Wraith, Stephen Waldek
USA—Atlanta, GA: Paul Fernhoff; Baltimore, MD: Ada Hamosh; Boston, MA: Katherine Sims; Chapel Hill, NC: Joseph Muenzer; Charlottesville, VA: William Wilson; Chicago, IL: Barbara Burton; Cincinnati, OH: Nancy Leslie; Columbus, OH: Kim McBride; Denver, CO: Janet Thomas; Greenville, SC: Curtis Rogers; Hartford, CT: Robert Greenstein; Houston, TX: Christine Eng; Iowa City, IA: Sara Copeland; Jackson, MS: Omar Abdul-Rahman; Kansas City, MO: Laurie Smith; Lebanon, NH: John Moeschler; Miami, FL: Parul Jayaker; Minneapolis, MN: Nancy Medelsohn, Chet Whitley; New York, NY: Greg Pastores; Norfolk, VA: Virginia Proud; Oakland, CA: Paul Harmatz; Omaha, NE: William Rizzo; Paterson, NJ: Jennifer Ibrahim; Phoenix, AZ: Kirk Aleck; Portland, OR: Robert Steiner; Salt Lake City, UT: David Viskochil; Seattle, WA: Ronald Scott; Sioux Falls, SD: Laura Keppen; St. Louis, MO: Dorothy Grange; Washington, DC: Cynthia Tifft