Musketeers' Memorandum

What is the Musketeers' Memorandum?

There are over 7000 rare diseases which collectively affect 1 in 17 people, with most being the result of a genetic disorder. When viewed as a group, rare diseases are very common. The national approach, made possible by the NIHR, means we are able to collect together enough people with a particular condition to make a research project feasible. This leads to improved care and the development of new treatments. A prime example of this is the 'NIHR UK Rare Genetic Disease Research Consortium Agreement', more commonly known as the Musketeers' Memorandum (MM).

The Musketeers’ Memorandum is an agreement between 24 host NHS organisations of the Regional Genetics Network and major genetics referral centres across the UK. It allows a single lead UK genetics unit to rapidly enable set-up for a rare disease non-CTIMP (Clinical Trial of an Investigational Medicinal Product) research project, which can then be delivered across all regional genetics centres. When a regional genetics centre, supported by their NHS trust, develops a rare disease non-CTIMP project, the R&D teams responsible for all the other regional genetics centres in the UK would be contacted to sign off the study without the need to perform a full protocol review or individual negotiations.

This has enabled national involvement in studies that might not otherwise have been able to recruit adequate numbers of patients. It speeds up the protocol review and negotiation process and enables fair and even access to patients with rare disease across the UK. The Memorandum is included in the UK Rare Disease Strategy.

The benefits to people with rare disease are significant and it is hoped that every centre in the UK joins the Musketeers' Memorandum - all for one and one for all!

To request a copy of the agreement, email the MM team on musketeers@nihr.ac.uk.

Musketeers' Memorandum Access Policy

Under this agreement, residual material from the blood, saliva, hair and previously collected tissue (i.e. samples from which DNA, RNA or protein could be extracted from), which are collected in studies and stored in bio banks, can be shared for the benefit of research into rare genetic disease. The local processes of each biobank with stored material would need to be applied.