A study about the involvement of multiples in research

Research with multiples contributes to our knowledge of issues relevant specifically to multiples but also has the potential to contribute transformative insights to our understanding of health and disease for the whole population. In 2018 ICOMBO gathered information to present to researchers about what multiples (and their families) would like if they are involved in research.

The initial results of the research were published to coincide with International Multiple Birth Awareness Week (5 – 12 November 2018).

Highlights of research survey:

• Total of 2,643 responses from 38 countries (although majority of responses from 11 countries – United Kingdom, New Zealand, Australia, USA, France, Denmark, Norway, Canada, Japan, Spain, Germany)
• Just under 8% had participated in one multiples-related research study previously and another 8% had participated in more than one study (84% had not participated in any studies).
• 30% of respondees would be willing to participate in research studies in the future (multiples specific or not) and another 19% would participate only in studies that provide information of direct benefit/relevance to multiples themselves. 44% were unsure if they would participate while only 6% were a definite no to participating in any research studies.
• 32% of those willing to participate in studies said they would not need any incentive to do so. For others the most common incentive would be reimbursement of any expenses, e.g. petrol/travel costs followed by meal vouchers.
• People want to be informed of the outcome of the research with nearly half the respondees wanting full details of the results not just lay summaries.
• People started to feel more uneasy when it came to taking biological samples (this is where people started skipping questions so the numbers may actually be higher for those unwilling to provide samples). 16% of people who answered did not want any samples to be taken (i.e. could only measure things such as weight, height or ask questions) and 31% were unsure. Of those willing to give samples cheek swabs were the most accepted biological sample with 53% willing to give these followed by saliva at 43%. At the bottom of the list only 5% would give muscle tissue and 3% sperm.
• Some respondees were also uncomfortable about samples being taken at birth with 27% not wanting any samples taken. Around 50-60% were willing to have cheek swab, cord blood, placental tissue, umbilical cord tissue or meconium samples taken.

For more information on the research study, please contact the Reseach Director at research@icombo.org.