The Rare Disease Registry Program (Gaucher, Fabry, Pompe, MPS1) Am 9

• Research type

  Research Database

• IRAS ID

  232441

• Contact name

  Jigar Chheda

• Contact email

  jigar.chheda2@sanofi.com

• Research summary

  The Rare Disease Registry Program (RegistryNXT)

• REC name

  North West - Greater Manchester Central Research Ethics Committee

• REC reference

  19/NW/0303

• Date of REC Opinion

  17 Jun 2019

• REC opinion

  Favourable Opinion

• Data collection arrangements

  The data will be entered by study sites into a e-CRF called RAVE. The data will be processed, cleaned and stored in this database. The owner of this data collected will be the Genzyme Corporation.

• Research programme

  This program is ongoing and supported by Investigators, patients and patient associations.

• Research database title

  The Rare Disease Registry Program (RegistryNXT)

• Establishment organisation

  Genzyme Europe B.V

• Establishment organisation address

  Paasheuvelweg 25

  Amsterdam

  NETHERLANDS

  1105 BP