Enroll-HD is a brand new worldwide observational study which has now taken over from the REGISTRY study which has recently closed to recruitment.

Enroll-HD is a study which aims to accelerate the development of therapies for HD by collecting more uniform clinical data and biological samples to better understand the natural history of HD. The study will build a comprehensive and extremely valuable database of information which will be available for use by HD researchers worldwide. “Enroll-HD will also be used for identifying which volunteers may be suitable for forthcoming treatment trials.”

For more information about the differences between Enroll-HD and REGISTRY this article on HDBuzz provides a more detailed overview.

Getting involved

Who can take part?

Any member of a family affected by HD can take part*. This includes:

  • Individuals who know they carry the expanded gene, whether or not they show signs and symptoms of the disease
  • Individuals who are at risk of developing the disease (but have not undergone genetic testing)
  • Individuals who have a family history of HD but know they do not carry the expanded gene
  • Spouses/partners (not blood-related) of family members with HD

Children under the age of 18 with clinically diagnosed juvenile HD may be included in this study with the consent of a parent or legal guardian.

(* there are some restrictions based on medications being taken, your Enroll-HD site can advise further).

How do I get involved?

There are currently 14 study sites in the UK, if you already attend a specialist clinic you can contact them and ask about involvement. Otherwise please look for your closest centre from the list of centres in the United Kingdom below:

Birmingham & Solihull Mental Health NHS Foundation Trust
Edgbaston, Birmingham B15 2FG, UK
Phone: 0121 301 2068
Principal investigator: Hugh Rickards
Coordinator: Ellice Parkinson

Royal Devon and Exeter NHS Foundation Trust
3rd floor Noy Scott House, Barrack Road, Exeter EX25DW
Phone: 01392 406979
Principal investigator: Timothy Harrower
Coordinator: Sarah Irvine

University of Cambridge
John Van Geest Centre for Brain Repair, ED Adrian Building, Forvie Site, Robinson Way, Cambridge, CB2 0PY, UK
Phone: +44 1223 331160
Principal investigator: Roger Barker
Coordinator: Sarah Mason

Cardiff & Vale University
Cardiff University Hadyn Ellis Building - Maindy Road, Cardiff, CF24 4HQ, UK
Phone: +44 29 20745237
Principal investigator: Anne Rosser
Coordinator: Rebecca Cousins

Glasgow Clinical Research Faciliy
Level 5, Institute of Neurological Sciences, Southern General Hospital, Glasgow, G51 4TF, UK
Phone: 0141 232 7600
Principal investigator: Stuart Ritchie
Coordinator: Catherine Deith

Leeds Teaching Hospitals
Department of clinical genetics. 3rd floor Chapel Allerton Hospital, Chapeltown Road, Leeds LS7 4SA
Phone: 0113 3924862
Principal investigator: Emma Hobson
Coordinator: Elizabeth Rowett

Leicestershire Partnership
Mill Lodge - Mill Lane, Kegworth DE74 2EJ, UK
Phone: 01509 561615
Principal investigator: Julia Middleton
Coordinator: Caroline Hallam

The Walton Centre
Neuroscience Research Centre - Fazakerley, Lower Lane, Liverpool L9 7LJ, UK
Phone: 0151 5295668
Principal investigator: Rhys Davies
Coordinator: Louise Pate

Guy’s and St Thomas’s NHS Foundation Trust
Guy’s Hospital - HD Clinic, Genetics Dept, 7th Floor Borough wing, Great Maze Pond, London SE1 9RT
Phone: 0020 7848 5355
Principal investigator: Thomasin Andrews
Coordinator: Raleen Fernandes

University College of London
2nd floor, Ormond House - 27 Boswell Street, London WC1N 3JZ, UK
Phone: 020 344 84056
Principal investigator: Sarah Tabrizi
Coordinator: Monica Lewis

Central Manchester University Hospitals NHS Foundation Trust
Manchester Centre for Genomic Medicine, Manchester M13 9WL, UK
Phone: 0161 7012541
Principal investigator: David Craufurd
Coordinator: Cheryl Stopford

Northumberland, Tyne & Wear NHS Foundation Trust of St Nicholas Hospital
Jubilee Road, Gosforth, Newcastle-upon-Tyne, NE3 3XT, UK
Phone: 0191 2232740
Principal investigator: Suresh Komati
Coordinator: Jill Davison

Plymouth Hospitals NHS Trust
Leanne Timings - Clinical Studies Officer, Neurology, Dendron, Mental Health - Room N7 - ITTC Building - Plymouth Science Park, Plymouth PL6 8BX
Phone: 01752 432848 Principal investigator: Rupert Noad
Plymouth Coordinator: Hayley Starkey
Cornwall Coordinator: Julie Frost
Phone: 01872 255134

Sheffield Children’s NHS Foundation Trust
Sheffield Children’s NHS Foundation Trust, Clinical Genetics Service - Western Bank, Sheffield S10 2TH
Phone: 0114 2717032
Principal investigator: Oliver Quarrell
Coordinator: Tom Miller

North Staffordshire Combined Healthcare
Bucknall Hospital - Neurology Department, Eaves Lane, Stoke-on-Trent ST2 8LD, UK
Phone: 01782 441773
Principal investigator: George El-Nimr
Coordinator: Sue Wood

Avon and Wiltshire Mental Health Partnership
Victoria Centre, 53 Downs Way, Swindon, SN3 6BW, UK
Phone: 01793 327896
Principal investigator: Lesley Gowers
Coordinator: Carol Hall

St Andrews Healthcare
St Andrew’s Healthcare - Kemsley Neuropsychiatry Division, Billing Road Northampton, NN1 5DG, UK
Phone: +44 1604 616000
Principal investigator: Elvina Chu

Oxford Radcliffe Hospitals Room 4401D Level 4 Main Hospital, John Radcliffe Hospital Headley Way - Headington, Oxford OX3 9DU UK
Phone: 07767005974
Coordinator: Kathryn Dixon

Poole Hospital Neurology Research Suite, Eddie hawker Wing 1st floor, Longfleet Road, Poole BH15 2JB UK
Phone: 01202 263210
Coordinator: Annemieke Fox

St. George’s Healthcare NHS Trust Dr Nayana Lahiri SW Thames Regional Genetics Service, Cranmer Terrace, London SW17 0RE UK
Phone: 0208 7251971
Coordinator: Nayana Lahiri

Royal Berkshire Hospitals NIHR Clinical Research Network: Thames Valley and South Midlands, Royal Berkshire Hospital - Neurology Department, South Block Annex, Reading RG1 5AN UK
Phone:01865 234614
Coordinator: Kathryn Dixon

Southampton University Wellcome Clinical Research Faciliy, LEVEL C Mailpoint 218, Southampton General Hospital, Tremona Road, Southampton SO16 6YD UK
Phone: 023 8120 4989
Coordinator: Lesley Mackinnon

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