Getting advice about having a family

Examples of Support

Family planning advice

Advice on whether prenatal testing is right for you

Help & support when pregnant (e.g. prenatal direct mutation & exclusion testing)

Help & support when thinking about starting a family (e.g. Preimplantation Genetic Diagnosis)

Integrated Multi Agency Arrangements, Referral Pathways and Resources

All referrals to local Dept. of Clinical Genetics can be made by any health & social care professional, most commonly GPHD SpecialistHD Clinical Lead, Psychiatry & Specialist Youth Advisors. Clients can also self refer to Clinical Genetics if preferred.

SCI Gateway should clearly identify HD Specialists as main point of contact for information and advice about HD.

Based on individual need clients may be seen by a number of members of the genetics team. This may include Consultant Geneticist, Genetic Counsellors, Genetic Psychologist, HD Specialist and Specialist Youth Advisor.


The International Protocol for Testing should be followed unless a clinical decision has been made to follow a local alternative.

All appointments should meet the treatment time guarantee and referral standards of individual services used.

Whoever is designated as lead professional should take responsibility for coordinating the support each client requires throughout


People living with the genetic risk of HD and their families have easy access to accurate and understandable information, receive emotional and practical support and feel supported through all family planning outcomes.

National Care Framework for Huntington's Disease