UK FSHD Patient Registry

Legal Notice, Privacy Notice and Data Protection Statement

The UK FSHD Patient Registry (UK FSHD Registry) is a national research database project. Creating a patient registry requires the existence of one or more electronic files containing the personal and medical data of the registry participants. This notice explains how we store and use these data.


The registry is owned and operated by the John Walton Muscular Dystrophy Research Centre at Newcastle University in the UK, under the responsibility of Dr Chiara Marini Bettolo. The data controller1 responsible for managing and securing the data, is:

Newcastle University       
Newcastle upon Tyne      
Tyne and Wear  
NE1 7RU              
United Kingdom

Data will be managed in compliance with GDPR legislation regardless of the UK’s status in the European Union.

The data will be processed in line with the University Data Collection Notices which can be found at: Data will be retained in accordance with the University’s Records Management Schedule guidance.             

What data do we collect?

We collect participants’ personal details such as name, address, date of birth and gender, so that they can be identified and contacted by registry staff where appropriate. We also collect details of the symptoms people experience, such as the level of motor function. Clinical and genetic data such as genetic test results may also be added to the registry by the participant’s doctor, if the participant nominates them during the registration process.

The lawful basis for processing these data is consent (participants give clear consent for us to process their personal data for a specific purpose). The purpose of processing these data is to meet the objectives of the registry:

  • Help identify participants for clinical trials as they become available.
  • Improve understanding of the prevalence and natural history of FSHD.
  • Support existing research and encourage further research into these conditions.
  • Provide doctors and other health professionals with information on managing these conditions, to help them deliver better standards of care for their patients.

How do we collect data?

Participants directly provide most of the data collected. We collect and process data when participants:

  • Set up a registration profile online.
  • Complete the registry questionnaire.
  • Use the registry website.

We collect personal and health data about participants from the following sources:

  • From participants: when they register on the UK FSHD Registry website.
  • From participants: when they contact us via email, phone or post.
  • From medical or healthcare professionals: when participants give permission for us to contact them.

How do we store data?

The protection of personal data is very important to us. All data are treated confidentially, encrypted and stored on a secure server in the UK, and are subject to protection under the General Data Protection Regulation (GDPR) (EU) 2016/679) and the UK General Data Protection Regulation (UK GDPR), tailored by the Data Protection Act 2018.

Under the responsibility of the Registry Principal Investigator (Dr Chiara Marini Bettolo), we will keep the data for as long as it is needed for the purposes outlined in the participant consent information. However, participants can ask us to remove it at any time by contacting the Registry Curator at [email protected].

How are participants identified in the registry?

Personal details such as name, address, email, date of birth, are never shared with anyone outside the core registry team. Each participant is assigned a unique, anonymous code which is used to identify their record if data are being analysed. Only the person in charge of the registry (Dr Chiara Marini-Bettolo) and persons explicitly appointed by her can use this code to access participants’ personal details.

How will we use the data?

Identifiable data will not be shared with third parties (separate legal entities to the University). We collect data so that we can:

  • Set up and manage participants’ online profiles.
  • Provide anonymous data reports in response to research questions (called “registry enquiries”) from third parties such as scientists, academic researchers, and pharmaceutical companies.
  • Contact participants with information about clinical trials or other research studies for which they may be eligible.
  • Send general email communications relevant to FSHD, such as newsletters, research results and standards of care.

Only the staff in charge of the registry have access to the data. Research or other documents based on data from the registry will never contain personal identifiable information about the participants. 

Before we even share anonymous information with third parties, we must have approval from the independent registry steering committee. Participant’s data will not be made available to employers, government organisations, insurance companies, nor to spouses, family members (except if the family member has registered the participant) or doctors. A specific doctor nominated by a participant during registration will be able to view (but not edit) the data provided by that individual.

The registry will share general (anonymous) statistical information and patient numbers with the FSHD community to add to their knowledge and understanding of these conditions and to raise awareness of the registry.

More information about how we look after and use data is available in the Participant Information Sheets and Consent Forms. Alternatively, contact the Registry Curator with any questions: [email protected].

For how long are participants’ data kept in the registry?

There is no set time limit for keeping data on the registry. Unless a participant asks us to remove their information, we will keep it for as long as we consider necessary for the purposes described in the Participant Information Sheet. However, participants can contact the Registry Curator to remove their data at any time.

What are participants’ data protection rights?

We would like to make sure participants are fully aware of all their data protection rights. Every participant is entitled to the following:

  • The right to access – the right to request copies of their personal data.
  • The right to rectification – the right to request that we correct any information they believe is inaccurate. They also have the right to request that we complete any information they believe is incomplete.
  • The right to erasure – the right to request that we erase their personal data, under certain conditions.
  • The right to restrict processing – the right to request that we restrict the processing of their personal data, under certain conditions.
  • The right to object to processing – the right to object to our processing of their personal data, under certain conditions.
  • The right to data portability – the right to request that we transfer the data we have collected to another organisation, or directly to them, under certain conditions.

Participants can exercise any of these rights by contacting us at: [email protected].

Newcastle University’s Data Protection Officer can be contacted at [email protected].

For information about how the University manages personal data more generally, please see our website:


Cookies are small pieces of data that a website can store in your browser and then use to identify you. We only use session cookies which are necessary for the function of the registry website. They are deleted when you close your browser and thus do not allow us to identify you after that. We do not use any other cookies, including third-party cookies.

Privacy policies of other websites

Our website contains links to other websites. Our privacy policy applies only to our website, so if users click on a link to another website, they should read the respective privacy policy.

Changes to our privacy policy

We keep our privacy policy under regular review and place any updates on this web page. This privacy policy was last updated on 17 February 2022.

How to contact us

For more details about the registry, the information on this website or the data we hold, or to exercise one of the data protection rights, please contact the Registry Curator: [email protected].


All the information and advice on the UK FSHD Registry website has been assembled to the best of our knowledge. However, in any individual case consultation with the attending doctor or other qualified health professional is strongly recommended. The registry website contents are for information purposes only and not intended as a substitute for professional medical advice, diagnosis or treatment. All users of the registry website are responsible for their own medical care, treatment, and oversight.

Although the greatest possible care has been taken in compiling the registry website, we cannot guarantee that all the information provided on these pages is accurate. Newcastle University assumes no liability for the accuracy of the registry website contents and will not be held responsible for any loss, damage or inconvenience caused as a result of any inaccuracy or error within these pages.

Newcastle University also assumes no liability for the contents and their accuracy on any third-party websites that are accessible through links on this website. These links are provided purely for users’ convenience, and do not imply that Newcastle University supports the information given on those pages.


1 Data Controller as defined by the General Data Protection Regulation (GDPR) (EU) 2016/679) and the UK General Data Protection Regulation (UK GDPR), tailored by the Data Protection Act 2018