Individual UK patient registration form

Individual UK patient registration form

So we can provide the best tailored support and care for you please register an individual with MPS, Fabry or a related disease living in the UK using this form. If you have any questions or problems completing this online form contact us on 0345 389 9901. For non-UK patient registrations please email us.

Details of person with a confirmed diagnosis of MPS, Fabry or a related disease

Title

First name*

Surname*

Date of birth*

Ethnicity

Name of condition*

Diagnosis date*

Diagnosing centre*

Specialist centre*
Great Ormond StreetManchester Children’s HospitalBirmingham Children’s HospitalRoyal Free HospitalNational HospitalUniversity Hospital BirminghamSalford Royal HospitalUniversity Hospital WalesBelfast Trust HospitalRoyal Hospital for Sick Children GlasgowOther

Please list


Name of specialist doctor*

Treatment (ERT, HSCT, Chaperone/oral, Intrathecal)*
ERTHSCT (transplant)Oral therapyClinical trial

Please list

__________________

About the person completing this form

Relationship to person with a confirmed diagnosis of a MPS, Fabry or related disease*
I am the individual with a confirmed diagnosisI am a parent/carer

If a parent/carer do you have parental responsibility (for those under 16 years)
YesNo
If a parent/carer of an individual over 16 years who lacks capacity do you have authority to act on their behalf
YesNo



What is your first language?

Do you require an interpreter?
YesNo

Is there any other information you wish to share?

__________________

Contact information and preferences for person completing the form

Title

First name*

Surname*

Address line 1*

Address line 2

Address line 3

Postcode*

County

Main phone number*

Second phone number

Email address*

Are you 16 or over?*
YesNo

Parent/guardian’s phone number



Parent/guardian’s address
As aboveDifferent address

Address line 1

Address line 2

Address line 3

Postcode




I would like to interact with the MPS Society’s Advocacy Support Team. I give my consent for them to contact me in the following ways:
PostPhoneEmailFace to faceSMS, Messenger, WhatsApp


I would like to receive information about the services of the MPS Society, MPS events and conferences, information and updates on the work of the MPS Society, including the MPS magazine, in the following ways:
PostPhoneEmailFace to faceSMS, Messenger, WhatsApp


I would like to receive information and updates regarding research, clinical trials, treatment and care options relevant to MPS, Fabry and related diseases, in the following ways:
PostPhoneEmailFace to faceSMS, Messenger, WhatsApp


I would like to receive information and contact from MPS Commercial in relation to clinical trial support and reimbursement, surveys and research, video interviews and Managed Access Agreements, in the following ways:
PostPhoneEmailFace to faceSMS, Messenger, WhatsApp


I do not wish to hear from the MPS Society or MPS Commercial

__________________

Permission to store your data

To comply with the Data Protection Act (1998) and the new GDPR (2018) we are required by law to tell you how we use this data and ask for your permission to store and process your personal and sensitive data for this purpose.

Individual patient records will be stored on a secure electronic case management system accessed by members of MPS staff only. Paper copies of your data may also be stored securely by the MPS Society.

By signing this form you are giving your permission for us to process your data for the purposes listed in the privacy statement below.

Please note that you can withdraw your consent at any time by sending us your request in writing.


I am over 16 years old and hereby provide my individual consent for the MPS Society to process personal data for the purposes of those listed above.I hereby confirm that my child is under 16 years or lacks capacity to give individual consent and I provide parental consent on their behalf for the MPS Society to process personal data for the purposes of those listed above.

Consent form

If you require the advocacy support service to liaise with other services or act on your behalf please also complete the appropriate consent form.

Privacy statement

We will always store your personal details securely. We will use them to provide the service(s) that you have requested and communicate with you in the way(s) you have agreed to. Your details may also be used for analysis purposes, to help us provide the best possible service. We will not pass on your details to anyone else and we will only share them if required to do so by law. Read our full data protection, GDPR and privacy policies here or alternatively you can request a copy by contacting the office.