Wishing everyone a very happy new year!!
The UK Mastocytosis Support Group are very pleased to be collaborating with Blueprint Medicines and a team of patient advocacy groups and researchers from around Europe in an effort to gather really important information about what it’s like to live with systemic mastocytosis (SM). Data on life with SM can help with a number of important tasks: to the NHS about the need for better services and the need for new medicines and to communicate more easily with family, friends, and employers about the challenges of SM.
The goal of this survey is to better understand the burden of SM, how people with SM feel about their daily lives, their relationships with their doctors, and how well they feel their doctors understand the hardships of SM. Your anonymous feedback will not be shared with your doctor or any other participants. This survey is sponsored by Blueprint Medicines Corporation and was developed in partnership with systemic mastocytosis patient advocacy groups and healthcare providers in the European Union and the United Kingdom. In compliance with UK GDPR standards, survey results are de-identified and Blueprint Medicines will not have access to individual participant data.
Who can take part?To take part in this survey, you must:
• Be 18 years of age or older
• Have been diagnosed with any form of SM by a healthcare professional
This survey will be conducted online, will consist of about 100 questions, and should take about 30 minutes to complete. Please follow the instructions below: Type the following URL in your browser or click the link below to access the survey: http:prismsmeurope.com
This is a large survey, and every participant counts in helping gather useful data that may help the SM community. Again, taking part in this survey is completely voluntary, and your feedback will be anonymous. Taking part may help the SM community better understand this rare disease and how doctors can better treat you and other patients with SM.
For those of you WITHOUT a confirmed diagnosis of systemic mastocytosis, please know that we hope there will be similar surveys in future to address your needs. We hope that by gathering this information about SM, other patients will also benefit from this information being shared publicly at the end of the project.
