MPS II Parents or Patients Needed

Mon, 06 Feb 2012 13:53:00 -0600

I was contacted today from Quantum MR from the UK. They are looking for parents or patients of MPS II who would like to participate in a medical review of healthcare in the US. The interview is about 60 minutes long and by helping with their review you would receive a cash payment. The contact information is below. Please let me know if there is any more information you need and I would be happy to follow up on it. Hopefully by helping this is another way to help us in our fight against Hunter Syndrome.

Kristin

Dear Kristin,

Thank you for talking to me just now.

As explained we are a UK based medical data collection agency. We would like to invite patients and/or parents of patients (if underage) to take part in a telephone based interview/study which objective is to review the pathways within the healthcare systems in the US from diagnosis to provision of clinical care for people suffering from Mucopolysaccharide Diseases.

For this we seek 2 patients or parents of patients (if underage) in the US with one of the following conditions:

Hunter syndrome
Hereditary Angioedema
Fabry's disease

The research is designed to understand:

· How better support can be offered to patients through their Healthcare systems and their support groups

· Patients experience of the healthcare system from diagnosis onwards

· Patients likes and dislikes in their interactions with Healthcare professionals

· Beyond the constraints of patient compliance how the patients journey can be made more hassle free

The research is a 60mins telephone interview to be conducted at any time of their convenience between Monday Feb 13th and Friday Feb 17th 2012 and each participant will be offered €200 as a thank you for their time. Quantum MR will also make a donation of $200 per patient to your support group should you be in the position to advertise our request through your organisation.

The patients will not be identifiable and all results will be aggregated anonymously. Quantum MR abides by the codes of conduct of the following Market Research governing organizations: ESOMAR, BHBIA and MRS. These codes guarantee that all information gathered during the course of this study will be treated anonymously and that we will not disclose your details to any third party.

Please kindly indicate when it would be possible for me to call you to discuss our request further should you have any question. Any person interested in taking part can contact us by email: ahmed.s@quantum-mr.com (with their full name; contact details) or 0044 1603 660 338 or 0044 753 324 999.

I really hope you will be able to help us and I look forward to hearing from you.

With Kind regards,

Ahmed

Ahmed Soumahoro

Director

DL: +44 (0) 1603 660 338

Mob: +44 (0) 7538 324 999

Web:www.quantum-mr.com

Quantum Call Centre Unit

Sackville Business Centre

Sackville Place

44-48 Magdalen Street

Norwich NR3 1JU

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Fri, 20 Jan 2012 16:28:00 -0600

We are in the process of starting our new website, so please come back and see the final project. We are gearing up for a fun filled year with Help Extinguish Hunter Syndrome, so far this year we already have our dates for the IAFF F-88 Annual Golf Outing which have been a wonderful partner with us in bringing Awareness and help raising funds for research. The golf outing is set for May 12, 2012 at Heatherwoode Golf Course. Our 4th Annual "Friends of Aiden 5K" and Firefighter 5K Challenge is set for June 16, 2012. Can't wait to see if Huber Heights Fire Department brings home the trophy again this year!

2011 was a good year for us considering we are a new organization, we were able to help two families affected with Hunter Syndrome and raise a good amount of money for UNC. So please continue to help us grow and make a impact with this horrible disease, and some day finding a CURE! Again Thank you as we continue to fight Hunter Syndrome!

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MPS II Parents or Patients Needed

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