aHUS Registry

• Research type

  Research Database

• IRAS ID

  342088

• Contact name

  Nuria Saval

• Contact email

  Nuria.Saval@alexion.com

• Research summary

  An Observational, Non-Interventional, Multi-center, Multi-national, Study of Patients with Atypical Hemolytic-Uremic Syndrome (aHUS Registry)

• REC name

  North East - Newcastle & North Tyneside 2 Research Ethics Committee

• REC reference

  24/NE/0079

• Date of REC Opinion

  26 Jul 2024

• REC opinion

  Further Information Favourable Opinion

• Data collection arrangements

  The following data is collected via eCRF at each participating site:
  demographics, clinical characteristics, signs and symptoms of TMA complications/manifestations, laboratory data, vital signs, special events of interest, adverse events, concomitant medications and procedures, disposition.

• Research programme

  Patients with aHUS

• Research database title

  An Observational, Non-Interventional, Multi-center, Multi-national, Study of Patients with Atypical Hemolytic-Uremic Syndrome (aHUS Registry)

• Establishment organisation

  Alexion Pharmaceuticals Inc.

• Establishment organisation address

  121 Seaport Boulevard

  Boston, MA

  United States of America

  02210