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Smartnet and the North Star Project

What is Smartnet?

Smartnet is part of a wider clinical neuromuscular network that consists of doctors and physiotherapists working in specialist tertiary centres across the UK who are interested in ensuring best care for patients with Spinal Muscular Atrophy (SMA). Part of the project involves setting up a database which will hold anonymised information about individuals with SMA and the clinical changes which may occur in the condition over time. This information, collected over several years, will help clinicians and physiotherapists give accurate information to families about the progress of SMA and provide tailored clinical advice. Smartnet will look at a range of measures including motor function, respiratory measures, muscle strength and functional activities. It is planned that this database will form the backbone for clinical trials in SMA so we can collaborate further with our European and International partners. A similar database has been created for those with Duchenne Muscular Dystrophy (DMD) (North Star Project). This has proved very successful and Smartnet will work along side its sister project. The database is planned to go live in early 2009.

Who is coordinating the project?

Anna Mayhew is the project coordinator for this project. She was appointed in August 2006 and is employed by Institute for Child Health. She is a physiotherapist with 15 years experience working with children and she completed her doctorate in 2003 from Sheffield University.

Who is the project funded by?

The Jennifer Trust for SMA funds the project with support from MDC who are jointly funding the creation and maintenance of the database.

What work is in progress?

  • Establishing the use of three motor function assessments for reviewing ambulant and non-ambulant patients with SMA. This includes reliability testing and regular site visits
  • Creating medical and physiotherapy assessment forms which will form the basis for clinical note taking as well as a means of populating the database
  • Working with the design company to create a national database for collecting longitudinal outcome measures for individuals with SMA
  • Working with Treat-NMD and the newly launched SMA registry to form links between these databases
  • Reviewing the literature around outcome measures in SMA and neuromuscular disease in general
  • Creating links with our international partners and supporting the neuromuscular network here in the UK

Professionals seeking further information regarding the project please contact Dr Anna Mayhew at ICH – a.mayhew@ich.ucl.ac.uk or Dr Adnan Manzur at Great Ormond Street Hospital – ManzuA@gosh.nhs.uk

For members of the Neuromuscular Network see North Star web page

For further information:

1)Executive Summary: SMA Summit of Drug Development September 28-29th 2007 Bethesda, MD, USA

2) Wang CH, Finkel RS, Bertini ES, Schroth M, Simmonds A, Wong B, Aloysius A, Morrison L, Main M, Crawford O, Trela A (2007) Consensus on standards of care for Spinal muscular atrophy. Journal of Child Neurology. 22:8 1027-1049

3) www.treat-nmd.eu/assets/documents/SMA

The North Star Project

The North Star Project has now been active for four years. The overall aim is to optimise the care of young patients with Duchenne muscular dystrophy (DMD) by achieving and practicing consensus on best clinical management, with agreed assessment and treatment protocols, no matter which clinical centre they attend. Clinical Leader for the Project is Dr Adnan Manzur, Consultant Paediatrician with a Special Interest in Neurology, based at the Dubowitz Neuromuscular Centre, Great Ormond Street Hospital, London. The project is coordinated by Elaine Scott, research physiotherapist from Muscular Dystrophy Campaign

 Project activity can be split into three key areas which are detailed below.

The North Star Clinical Network

The network consists of lead consultants, senior physiotherapists and other allied health professionals from seventeen specialist paediatric tertiary centres across the UK. Membership includes 21 consultants, 17 physiotherapists and other allied health professionals. Over 400 ambulant children with DMD are registered with these centres. Consensus methods have been used in the development of a Statement on the role of glucocorticoid corticosteroids in DMD and other related literature.  

Assessment protocol

A standardised physiotherapy assessment protocol has been developed for ambulant children with DMD via a lengthy process of consensus and review. Tests include assessment of functional abilities, muscle strength and pulmonary function. Both medical and physiotherapy assessment proformas have been produced for these children.

National Database for Duchenne muscular dystrophy

Information from the clinical assessment protocols from participating centres is, with parental consent, entered into the NorthStar database. Collating information from many centres about this rare but devastating condition gives a larger body of information to assist clinical decision-making and service development. The database was established in autumn 2006 and will therefore facilitate the process of audit and review which is necessary to ensure optimal treatment and management. Requests for access to anonymised data can be made via  Dr. Adnan Manzur, Clinical Leader, at the email address below. The clinical network has an active governance procedure and requests for information will be considered on an individual basis.

Professionals seeking further information regarding the project please contact Dr Adnan Manzur at Great Ormond Street Hospital – ManzuA@gosh.nhs.uk

For other general enquiries please contact northstar@muscular-dystrophy.org

The North Star Project is supported and substantially funded by the Muscular Dystrophy Campaign

Page last modified on 18 mar 11 11:43