Genetics for Patients

Online questionnaire

• Home
• Biography
• Contact

Would you like to help develop a new questionnaire to measure outcomes from clinical genetics services?

Volunteers needed for research

My name is Marion McAllister (find out more about me) and I am carrying out research to develop new ways of measuring how people from families affected by genetic diseases or conditions may benefit from seeing a geneticist / genetic counsellor or attending a genetics clinic. As part of this work, I am developing a questionnaire that will examine patients' thoughts, feelings and attitudes about the family disease or condition. You do not need to have used a clinical genetics service yourself to help with this research.

There has been very little research in this area and this is an opportunity for you to help with research that may improve services for affected families.

A clinical genetics service is a specialist service provided by the National Health Service (NHS), which offers (1) diagnosis of genetic conditions (2) information about genetic conditions including information about inheritance and risks to unaffected / unborn family members (3) genetic testing, and (4) supportive counselling to help the family make decisions and cope better with the genetic condition in their family. The service is offered to all members of a family in which a genetic condition may be present, not just those who have the condition.

I am looking for people aged 17 years and older from families affected by genetic conditions to help me with this, by completing an early version of the questionnaire. Please complete the questionnaire once, either on paper or online, imagining that you are about to see a genetic counsellor.

To obtain a paper copy of the questionnaire please contact me

Marion McAllister PhD, Genetic Counsellor and MRC Research Fellow,
Tel: 0161 276 8979 E-mail: marion.mcallister@manchester.ac.uk
The Nowgen Centre, 29 Grafton Street, Manchester M13 9WU

I am collaborating with The Genetic Interest Group to do this research, which is funded by the Medical Research Council. The study has ethical approval from The University of Manchester Committee on the Ethics of Research on Human Beings and is being conducted at The University of Manchester & Nowgen. The project will be completed in August 2010.

Academic Collaborators

• Prof Chris Todd
• Prof Graham Dunn
• Prof Shoshana Shiloh
• Dr Alex Wood

To complete the questionnaire online:

• 1. Click the QUESTIONNAIRE button below.
• 2. Once the page loads, read the Participant Information Sheet.
• 3. If you would like to proceed, click the CONTINUE button.
• 4. Enter the PIN you have been provided with (there is an option to retrieve the PIN number on that page).
• 5. Complete the Online Consent Agreement
• 6. Click the START QUESTIONNAIRE button
• 7. Complete the questionnaire.