Metaphyseal Chondrodysplasia, Schmid Type Patient Registry

• Research type

  Research Database

• IRAS ID

  321500

• Contact name

  Marta Bertoli

• Contact email

  marta.bertoli@nhs.net

• Research summary

  Metaphyseal Chondrodysplasia, Schmid Type Patient Registry

• REC name

  South Central - Oxford C Research Ethics Committee

• REC reference

  23/SC/0096

• Date of REC Opinion

  19 Jul 2023

• REC opinion

  Further Information Favourable Opinion

• Data collection arrangements

  We will collect participants first name, last name, date of birth, and contact details. This is so that we can stay in contact with them to support their entry of data and to ensure data is kept up to date. We will also collect data from patients relating to their health, medical history, and quality of life. This is to allow us to assess how MCDS affects patients around the world. Data is collected by the participant registering an account on an online database ran by Newcastle Hospitals and answering a set of questionnaires every year.

• Research programme

  This database aims to support the international MCDS research and patient communities.

• Research database title

  Metaphyseal Chondrodysplasia, Schmid Type Patient Registry

• Establishment organisation

  The Newcastle upon Tyne Hospitals NHS Foundation Trust

• Establishment organisation address

  Freeman Hospital

  Freeman Road

  Newcastle upon Tyne

  NE7 7DN