Participant recruitment is one of the most significant challenges in research on intellectual disability (ID). One potential solution is to develop a participant contact registry, which allows the researcher to contact participants directly rather than recruiting through multiple schools or service agencies. The authors describe the development of one such registry and results of a survey of registry families. Results suggest that families joined the registry to help others, they hope research in the ID field improves the daily lives of individuals with ID and their families, and they find research participation to be a positive experience. However, logistic concerns can be an important barrier to their research participation, and they would like more information about the research study both before and after participating.
One of the greatest obstacles to research in the field of intellectual disability (ID) is reliable recruitment of research participants. Several researchers have described the unique challenges of recruiting participants with ID for research studies. These challenges include access to the participants, the demands of daily life faced by this population, and the complexities of the consent process for this population (Becker, Roberts, Morrison, & Silver, 2004; Iacono & Murray, 2003; Lennox et al., 2005; MacDonald & Patka, 2012; Nicholson, Colyer, & Cooper, 2013; Scott, Wishart, & Bowyer, 2006). One approach to mitigating some of these difficulties is to establish a participant contact registry that can streamline the recruitment process by establishing a direct link to potential participants with ID. This article describes the development and operation of such a registry and presents the results of a survey on registry participants' views on the registry and on the research process in general.
One of the first challenges to recruiting participants with ID into research studies is simply locating them. Individuals with ID live in the community in family homes, apartments, or group homes. They go to neighborhood schools or specialized schools, work in community businesses, and attend community programs. ID researchers typically contact schools and agencies that serve individuals with ID for help in locating research participants. Several researchers have discussed difficulties working with “gatekeepers”—the superintendents of school systems and directors of agencies who can facilitate access to potential participants with ID for research studies (e.g., Iacono, 2006; Lennox et al., 2005; Scott et al., 2006). For large organizations or school systems, there are often multiple layers of administration a researcher must work through before gaining permission to recruit participants. Even when these efforts are successful, this process can be time consuming. For example, a researcher might need to get approval from the school system, followed by the principals of schools, the students' teachers, and the students' parents. Agency directors and school personnel themselves may be under pressure in their service roles and may not want to take on additional responsibilities or risk upsetting families or other stakeholders. Some researchers have cited gatekeepers' overprotection, lack of enthusiasm, lack of effort, or inadequate understanding of the proposed study as important obstacles to participant recruitment (Becker et al., 2004; Hilgencamp et al., 2011; Lennox et al., 2005; MacDonald & Patka, 2012; Nicholson et al., 2013). For example, if an agency director agrees to help recruit participants for a research study but mentions the study only once to potential participants and does not explain the study or how to sign up for it, a low recruitment yield is likely. Further, because each school or agency may serve only a small number of individuals with ID, the researcher may need to develop cooperative relationships with several different gatekeepers to complete a single study.
A second common obstacle to participant recruitment in ID research is the heavy demands of daily life already faced by individuals with ID and their families (e.g., Lennox et al., 2005; Nicholson et al., 2013). Families may have extra home caregiving tasks, medical appointments, and therapy sessions. They may not see research participation as a high priority or as something they could fit into their schedule even if they wanted to participate. The individual with ID might be intimidated or anxious about what she or he would be asked to do in a study, and family members may be overprotective (Becker et al., 2004; Nicholson et al., 2013). Further, recruitment can be compromised if the family or the adult individual with ID does not see any direct benefits of participating in the study (Becker et al., 2004; Lennox et al., 2005; Nicholson et al., 2013).
Third, the informed-consent process can be complicated, particularly for adults with ID, and in some cases it can discourage research participation. One issue is whether an adult with ID can or should sign informed consent for him- or herself (Iacono, 2006; Scott et al., 2006). Some adults with ID are legally able to sign for themselves, whereas others have legal guardians who sign for them. To determine whether each participant requires a legal guardian to sign, the researcher needs help from the referring agency. Another issue is comprehension. Even if an adult with ID is legally able to provide consent, she or he may have difficulty understanding the purpose of the study, what she or he will be asked to do, the risks and benefits, the protections, and the concept of research itself (Iacono & Murray, 2006; Lennox et al., 2005; Nicholson et al., 2013). For this reason, many researchers require the additional consent of an advocate or surrogate decision maker even for participants who can legally sign for themselves. Other reasons individuals with ID or their families may decline to participate in research include being poorly informed about the research study, not being given results of a previous study in which they participated, and being negatively influenced by family members or caregivers due to mistrust of research or researchers (Becker et al., 2004; Nicholson et al., 2013).
Some researchers have described successful methods of recruiting participants with ID. Cleaver, Ouellette-Kuntz, and Sakar (2010) reviewed 20 years of studies involving adults with ID in the Developmental Disabilities Program in the psychiatry department at Queen's University in Southeastern Ontario. They reported specifically on studies that involved primary data collection with adults with ID that required informed consent. They found that researchers were more successful at recruiting adults with ID into their studies if (a) they already had direct access to participants (i.e., they did not have to depend on a third party to contact the participants), (b) data collection was noninvasive (i.e., it did not require blood samples or physical examinations), and (c) consent was only from substitute decision makers (i.e., next of kin) regardless of the participant's legal-guardianship status.
Other researchers have also cited direct access to participants by trusted acquaintances as helpful to participant recruitment. Lennox et al. (2005) saw recruitment increase drastically when potential participants were telephoned by agency staff rather than by research staff. Swaine, Parish, Luken, and Atkins (2011) had good results when educational-program staff recruited participants for an on-site education-intervention study. Kao et al. (2011) arranged for research assistants to become trained volunteer-agency staff and then to contact families for the research study on behalf of the agencies. Hilgencamp et al. (2011) set up a partnership between care providers and academic departments and had doctoral students who were employed with the care providers recruit participants. Potential participants may feel more comfortable agreeing to participate when they talk about the research with someone they know and trust (Becker et al., 2004; but see MacDonald et al., 2009, for different views on the ethics of known versus neutral parties recruiting participants with ID).
For research on programs and policies specific to those with ID, a participatory-action research approach may be helpful. In this approach, individuals with ID are involved with several aspects of the research process, including planning, recruiting, implementing, and serving as participants. Individuals with ID may be more receptive to participating in a study if others with ID are involved in these ways (e.g., Conder, Milner, & Mirfin-Veitch, 2011; Jurkowski, 2008). Other successful approaches to participant recruitment include providing information sessions that are convenient to participants (Lennox et al., 2005; Hilgencamp et al., 2011; Swaine et al., 2011), making extra efforts (i.e., multiple telephone calls) to contact potential participants and remind them to return consent forms (Hilgencamp et al., 2011), and taking time with the consent process to reduce stress (Hilgencamp et al., 2011).
Another potentially successful approach to recruiting participants with ID is to develop a participant contact registry of individuals who are interested in participating in research studies. Once established, a participant registry can provide easy and efficient access to potential participants. Access to the participants is direct, and researchers do not have to go through gatekeepers to invite individuals or families to participate every time they conduct a study. Even though registry families experience many daily demands, they have made a decision to contribute to research and therefore they may try very hard to work out the logistics. Further, they may become increasingly comfortable with research participation and with researchers as they participate in more studies. Finally, the consent process can become more streamlined as registry coordinators come to know unique guardianship relationships of the registry participants. For example, for adults with ID, the registry can record the types of assistance each adult needs, including whether they have a legal guardian and who, if anyone, helps them with decision making.
Several researchers have described the development of participant contact registries for target populations other than people with ID. For example, Fellows, Stark, Berg, and Chatterjee (2008) described two parallel registries of patients with brain injuries at the University of Pennsylvania and McGill University. Janoski, Laird, Robinson, and South-Paul (2005) described a registry of community-based primary-care patients at the University of Pittsburgh. Lui, Warburton, and Bartlett (2009) described the 50+ Registry of older adults at the University of Queensland. Cahida et al. (2011) and Lichtenberg (2011) described a registry of urban minority older adults serving the University of Michigan and Wayne State University. Dowling, Olson, Mish, Kaprakattu, and Gleason (2012) described a registry of Alzheimer's patients at the University of Wisconsin. Some of these registries are for medical research, some are for behavioral research, and some are for both types of research.
Although participant contact registries of individuals with ID exist, notably at medical centers and National Institutes of Health–funded Intellectual and Developmental Disability Research Centers, none of those described in the literature is specifically for participants with ID. In this article, we briefly describe the development of the University of Alabama Intellectual Disabilities Participant Registry (UAIDPR, or “the registry”). After 2 and a half years of operation of the UAIDPR, we surveyed registry participants about their decisions to join the registry and their experiences participating in research through the registry. Specifically, we wanted to find out how important certain characteristics of the registry were to their decision to join, what they thought would cause someone to decline to join, and whether they had a good experience when they participated in research studies. We also asked open-ended questions about how to recruit more minority participants and about what research in ID is most important.
Development of the UAIDPR
The registry includes potential research participants of any age who already have a diagnosis of ID or have a syndrome closely associated with ID (Fragile X, Williams, etc.). However, to immediately facilitate our own research, we were especially interested in recruiting families with children and adolescents with Down syndrome who lived within about a 2-hr drive of the University of Alabama in Tuscaloosa. The registry operates under Institutional Review Board approval, and families must sign informed consent to be entered into the registry. Information on registry families is protected—researchers wishing to use the registry must go through the registry coordinator, who identifies potential participants and makes the first contact. When asked to participate in a study, a family is free to decline, and the registry may contact each family no more than three times per year to ask them to participate in studies. It is an explicit feature of the registry that the burden of participation is spread among the registrants, and no one participant or family is expected to participate every time they are asked.
The first step in recruiting families into the registry was to develop a set of recruiting contacts. These were people who work with individuals with ID in school systems, hospitals and clinics, social-service agencies, and parent or advocacy organizations. In many cases we traveled to meet with the recruiting contacts and gave informational talks describing the registry, how it would work, and the types of research projects it would support. With the help of the recruiting contacts, we used both passive and active recruitment strategies (see Kao et al., 2011). Passive strategies included asking the recruiting contacts to distribute brochures and flyers about the registry to potential participants and to assist them with the information whenever necessary. In these cases, potential participants could phone or mail a card back to the registry to make initial contact. Then we followed up to provide more information and the paperwork needed for them to join the registry. In some cases we posted ads or notices in agencies' newsletters or on their websites. Also, we set up our own informational website, and anyone viewing the website could contact us. We linked the UAIDPR website to websites that serve the ID community.
We also engaged in more active recruitment strategies such as attending conferences or events and either making a presentation or simply being available to talk with parents. Most of the conferences or events were organized by school systems or parent or advocacy groups to provide families with information about ID and the support systems available to them. Some were to promote awareness of ID (e.g., Down Syndrome Buddy Walk). At several of these events, we set up a table to talk individually with parents or guardians, provide brochures, and let them fill out the forms to join the registry if they chose to do so. This gave families an opportunity to engage directly with registry staff and researchers. If they so desired, they could get a full explanation of the registry, its purpose, and the importance of behavioral research, and they could have their questions answered.
The purpose of the registry survey was to find out what factors influenced families to join the registry and what factors influenced their experience as registry participants. Also, we were interested in the perspective of registry families on what we can do to bring more families into the registry (especially minority families) and what research is most needed in the ID field.
At the time the survey was completed, the registry included 257 individuals with ID in 245 families (some families had more than one individual with ID). The survey sample included 92 families, for a return rate of 37.6%. This included three families with multiple individuals with ID. The registry and survey-sample demographics are provided in Table 1. We report the race, ethnicity, birth year, and etiology of the family's individual with ID, as well as the mother's education level and the family's income. The registry demographics are based on individuals with ID (N = 257 in most cases), and the survey-sample demographics are based on families that participated in the survey (N = 92 in most cases). For the survey demographics, if there was more than one individual with ID in a family in the registry, we used the first individual listed.
Although the gender makeup of the registry and survey samples were fairly even (50%–54% males), the racial and ethnic makeup was not highly diverse, with 80%–90% Caucasian and 88%–92% not Hispanic (race and ethnicity were treated as overlapping categories). In both the registry and survey samples, African Americans were underrepresented and Hispanics/Latinos were overrepresented. Based on 2010 Census figures for the four recruitment states, and weighting based on proportions of registry participants from each state, we would expect approximately 25% of our registry and survey samples to be African American, rather than the actual respective 16.0% and 8.7%. We would expect 6.7% to be Hispanic/Latino, rather than the actual 11.7% and 8.7%. Expected representation of other racial groups was very small and thus difficult to evaluate (1.4% Asian and 1.9% more than one race).
As for etiology of ID, over half of families had an individual with Down syndrome, with the next largest etiology group being unknown etiology, followed by autism spectrum disorder, Rett syndrome, and cerebral palsy. Although birth year ranged from 1957 to 2010, most individuals with ID were born in either the 1990s or the 2000s; thus the vast majority were children or adolescents at the time the family joined the registry. Though annual family income varied substantially, the largest number of families was in the range of $75,001–$100,000. Most mothers had either a college degree or a graduate degree. Although the survey-sample demographics were largely similar to the registry demographics, the survey sample was slightly less racially and ethnically diverse, higher in family income, and higher in mother's education. Both the registry and sample demographics reflect ascertainment bias typical in research recruitment.
The registry questionnaire consisted of four sections. In the first section, there were five multiple-choice questions about participants' decision to join the registry. In the second section, there were three multiple-choice questions about why some families might not want to join the registry. In the third section, there were six multiple-choice questions about participants' experience in research studies through the registry. The fourth section asked two open-ended questions seeking suggestions for how to increase minority representation in the registry and soliciting parents' perspective on what research on ID is most needed.
Data were collected using both online data collection and traditional paper-and-pencil procedures. Each of the registry families and individuals was contacted using their preferred method of contact as recorded when they initially joined the registry. Families who were contacted by e-mail were provided a link to the online questionnaire; those contacted by postal mail were provided a hard copy of the questionnaire with a stamped return envelope; and those contacted by telephone were given the option to complete the questionnaire over the phone, have it mailed to them, or have the questionnaire link e-mailed to them. Each registry family or individual was sent an initial notice about the survey, followed by an invitation to participate 2 weeks later. They received up to two reminders, spaced 2 weeks apart, and if they completed the survey, they received a thank-you note. Families who participated in the survey allowed us to access their demographic data from the registry database.
Questionnaire section 1: The decision to join the registry
Responses indicated that families first heard about the registry in a variety of ways (see Table 2), though the majority of families first heard about the registry either through a parent or advocacy group (32.6%) or at an event or meeting they attended (21.7%). A large majority of families felt positive or very positive about the registry when they first heard about it (83.6%). The fact that the registry supports research that is low risk to participants was important or very important to 80.7% of families. The fact that the registry supports research that is not for profit was also important or very important to a majority of families (65.5%), as was the fact that the registry supports behavioral and not medical research (57.1%). The most important reason for joining the registry was to encourage research on ID (97.8% rated this as important or very important), followed by a sense of obligation (“I felt I should,” 66.7%) and wanting one's child to learn to help others (64.8%). Finally, when asked if they would recommend the registry to other families, 84.6% said yes, 13.2% said maybe, and only 2.2% said no.
Questionnaire section 2: Why others may not want to join the registry
Approximately a third of the respondents (31.1%) reported that they know a family that might be a good match for the registry but does not want to join the registry. The reason cited most often as important or very important for why someone might not want to join the registry was that they do not have time (65.5%). However, other reasons were cited by a majority of participants, such as not wanting to share their private information (56.3%) and not wanting to fill out forms (54.0%). Respondents endorsed several factors that they thought would encourage more parents to join the registry. The most important factor was finding out something about their own child in a research study (95.6% said this was important or very important), followed by being able to talk with the researchers (86.7%), having more information about what it is like to be in a research study (80.0%), and being able to sign up online (73.0%). See Table 3 for more detail.
Questionnaire section 3: Experience in research studies
Based on the survey sample, the activity rate for registry families was relatively high, with well over half (59.3%) having been invited by the registry to participate in one or more research studies prior to the present survey (i.e., in a 3-year time period). Of those families who had been asked, 87.0% actually participated in one or more studies, with 31.5% having participated in more than one study. Of those who participated in a study, 86.7% said they liked it or liked it a lot and 11.1% were neutral. We asked the families who had participated in a study through the registry how things could have been better. Only nine respondents offered ideas, but among them, a common theme was that they would have liked more information, either before the study (i.e., about the study procedures) or after it (i.e., about their child's results or the study results).
We were interested in the reasons families declined to participate in research studies when asked by the registry. Of the seven respondents who had declined to participate in a study, five cited reasons having to do with travel and time requirements. We also asked all families about reasons they might decline to participate in a research study in the future when asked. The reasons most often cited as important or very important were “it might not fit into my schedule” (66.3%) and “I might not want to drive too far” (62.2%). A small majority of respondents felt that it might be too expensive (51.7%), and half the participants said that it might take too much time (50.0%). See Table 4 for more detail.
Questionnaire section 4: Two open-ended questions
The first of the two open-ended questions asked how the registry could better reach out to minority families to join the registry. Of those who completed the survey, 75.0% offered ideas. Table 5 includes the percentage of respondents offering an idea in each of several categories. By far the most commonly endorsed approach was to use the local school systems to get the word out to potential participants, with nearly half of respondents making this suggestion. Several respondents also suggested getting help from health-care services, organizations that serve ID or minority communities, parent or advocacy groups, or community professionals (social workers, counselors, etc.). Still others suggested going to churches, homes, or neighborhoods; providing better incentives; and using the postal mail. Less common ideas for increasing minority recruitment to the registry included using a recruiter who was similar to prospective registry participants (in either minority status or having a child with ID); ensuring that the research is relevant to minority groups, not overly personal, and convenient; providing advice to the potential participants about their child; and hosting a meeting to explain the registry and the research process.
The second open-ended question asked respondents the types of ID-related research they felt was most needed. Sixty-three of the 92 survey respondents answered this question (68.5%). Table 6 includes the percentage of respondents offering a topic of research in each of several categories. The most common topic offered was how to improve teaching and learning (reading, writing, math, functional skills, etc.), followed by speech/language/communication and specific etiologies of ID (e.g., Down syndrome, Fragile X syndrome, autism spectrum disorder). Also, several respondents felt that transition from school to adult roles and how to improve schools were important topics for research. Other research topics cited as important by a few respondents were emotional and social skills, behavior management, causes and prevention of ID, inclusion and mainstreaming, medication to improve cognitive function, and support and resources for families.
The purpose of this article was to describe the development of a regional contact registry for research participants with ID and assess families' perspectives regarding the registry. We surveyed registry families about their decisions to join the registry, their thoughts about why other families may not want to join the registry, and their experience participating in research studies through the registry. In addition, we asked for their thoughts on how to recruit minority families into the registry and what research is most needed in the ID field.
Results of the registry survey converged on four themes. The first theme is that families who joined the registry did so out of a desire to help other families with ID by contributing to research. Also, they felt a sense of obligation and they wanted their son or daughter to learn to help others. Thus, when recruiting families or individuals into a registry or into specific research studies, it may be helpful to point out the specific ways in which they would be helping others. One way of doing this is to inform families who are being recruited about the important findings that have come from previous research involving registry participants. Another way is to inform families who have participated of what was learned from the specific studies in which they participated.
The second theme that emerged from the registry-survey results is that the main factors keeping families from participating in research are logistic concerns and concerns about privacy. Survey respondents suggested that the top reasons others may have for not joining the registry are that they do not have time, they do not want to fill out forms, and they may be wary of sharing their private information. Respondents also said that their own actual and anticipated reasons for declining to participate in research studies had mostly to do with logistics, such as travel distance, time, and scheduling. Many researchers have acknowledged that the extra demands of daily life for families and individuals with ID are important obstacles to participant recruitment (e.g., Lennox et al., 2005; Nicholson et al., 2013). When researchers can work around participants' schedules, reduce travel demands for participants, and assure participants that their information will be kept private, recruitment should be more successful. Building trust may be particularly important for participants' concern for privacy.
The third theme that emerged from the survey data is that families wish to be better informed about the nature and results of the studies in which they participate. For example, respondents felt that if families were better informed about what it is like to be in a research study and had a chance to talk with researchers, they might be more likely to join the registry. Some also felt that their own experience participating in research studies would be improved if they had more information about the study procedures before participating. Consistent with this, intermediaries (i.e., gatekeepers) interviewed by Nicholson et al. (2013) felt that “participant factors” may keep adults with ID from volunteering for research studies. These include feeling anxiety about what they would have to do in a research study and not thoroughly understanding the concept of research. Thus, lack of full understanding may importantly affect decisions to become involved in research, in terms of both joining a registry and deciding to participate in specific research studies.
Survey respondents also said that their experience in research would be better if they had more information about the results of the study afterwards (see also Lui et al., 2009). Receiving the study results provides confirmation that the time and effort they spent in the study were worthwhile. But also, it lets families and participants know exactly what was learned with the help of their time and effort. Nicholson et al. (2013) also reported that, according to intermediaries, if adults with ID had not received results from a previous study, they were less likely to agree to participate in a future study. Families and participants may not realize how long it takes before a reliable report of study findings can be disseminated. However, researchers can communicate this to them and provide interim findings in laypersons' terms. Our registry newsletter is one outlet for providing this type of information. Informal feedback from families suggests that this is much appreciated.
The fourth theme emerging from the survey responses is that families hope that research findings will help make daily life better for individuals with ID and their families. For example, a majority of survey respondents said that it was important or very important to them that the registry was restricted to behavioral (not medical) research. Anecdotally, we have heard many parents say that they are more interested in research that helps them understand their child's behavioral and learning difficulties—and how to manage them—than they are with biomedical research aimed at preventing or treating ID. Corroborating this anecdotal evidence, respondents' comments on what research is most needed in the ID field focused heavily on behavioral (not medical) issues, such as how to improve teaching and learning and how to improve transition from school to adult life. Of course, the survey responses come from a restricted group of families with ID—those who are willing to join a participant contact registry of this particular nature, and families with relatively high educational attainment.
Further, the most popular response when asked what would encourage more families to join the registry was finding out something about their own son or daughter. We have seen that many parents of individuals with ID are actively committed to understanding their child's strengths, challenges, and idiosyncrasies; and they are constantly looking for ways to promote their child's personal growth and development. It is possible in some studies to provide specific, reliable information about participants to their parents (i.e., studies that conduct clinical assessments or interventions). However, in many studies, the information gained is only useful in the aggregate. Even when it is possible to offer feedback on individual participants, researchers are leery of giving parents information about their child that may be unreliable, misunderstood, or misused. Further, providing this type of feedback outside of a clinical relationship with the participant raises ethical concerns. Still, individual feedback represents an important incentive for parents, and something for researchers to try to build into their studies when possible.
One of the aspects of the registry we felt was in need of improvement at the outset of the survey study was minority representation. Although our Hispanic/Latino representation was adequate based on demographics of the four contributing states, our African American representation was too low. Thus, we asked respondents for ideas on how to recruit more minority families into the registry. The most often offered idea category was to work with schools, teachers, special-education directors, and PTAs to reach out to minority families. In general, this was already a main approach for our recruitment, except that we did not work heavily with PTAs, and we did not ask specifically for help in recruiting minority families. Other ideas offered also largely replicated our past recruiting efforts, with a few exceptions. For example, we did not go to community professionals (social workers and counselors), community health clinics, or organizations that specifically serve minority communities. These sources may be helpful in future recruitment efforts.
Although studies have shown that “ethnic matching” of recruiter and potential participant is not itself particularly effective at improving recruitment rates of minority participants (see Woodall, Morgan, Sloan, & Howard, 2010, for a review), active recruitment strategies appear to be important (see Becker et al., 2004; Kao et al., 2011; Magana, 2000). Kao et al. (2011) found that active strategies (direct calls from patient or participant lists, recruiter attendance or presentation at an event, and word of mouth) were more effective overall than passive strategies (mailings, websites, recruitment flyers). However, the effect was particularly strong for Latino families, whether they had family members with ID or not. Registries aimed at recruiting older African American adults also have reported recruiting success using highly active recruitment strategies (Cahida et al., 2011; Lichtenberg, 2011). It is likely that the best outcome for minority recruitment can be achieved by using active strategies targeted toward minority-oriented organizations and events.
A number of limitations of the present study should be noted. First, the response rate for the survey was fairly low. This may seem somewhat surprising, given that the purpose of joining the registry is to participate in research studies. Moreover, the survey could be completed from the participants' homes without a large commitment of time or effort. However, it must be noted that an explicit philosophy of the registry is to maintain contact with participants without imposing a burdensome sense of commitment. This translates to an explicit expectation that registrants are not obligated to agree to participate every time they are asked. There are few comparable studies against which we can compare our response rate. Lui et al. (2009) surveyed participants in their 50+ Registry of older adults and achieved a much better return rate of 73.6% (142 of 193 surveys completed). However, their approach was different from ours. First, because their focus was on experiences of registry participants in research studies, they included in the survey only those older adults from their registry who had participated in at least one research study in the last year (i.e., the most recently active ones). Thus, their survey sample of 142 reflected only about 18% of their total registry population of over 800. In contrast, we included all participants in the registry, regardless of whether they had participated in any research studies. Also, the older-adult demographic (as in the 50+ Registry) in general may have more time to complete a survey than families of individuals with ID. A survey of investigators who operate and use registries could add importantly to this discussion.
Another limitation of the present survey is that neither our registry nor our survey sample was representative of the population of families with ID. To suit our research needs, our recruitment efforts emphasized children and adolescents with ID, with particular focus on Down syndrome. Thus, the registry is not representative in terms of age of the family's individual with ID, etiology of ID, and probably level of ID. In addition, although we used some active recruiting strategies, as already mentioned, we did not achieve adequate representation of African American families. Finally, the registry and survey samples of course consist of families and individuals who are pro-research and favorable to research participation.
In spite of the study's limitations, several important findings emerged. We found that families who were enrolled in our participant contact registry have a strong desire to help others by contributing to research. They feel that research can and should make daily life better for individuals with ID and their families. However, the logistics of participating in research can be a major barrier to research participation for families. When families do participate in research, their experience is good, but still they would like more information both before and after being in a study. Thus, there are many families and individuals with ID who are enthusiastic about participating in research. A participant contact registry can be an effective tool for communicating with those families and individuals and referring them to research studies. This is true especially if researchers using the registry are accommodating to participants in terms of time and place of participation, and especially if researchers take the time to provide full information to participants both before and after the study. With careful attention to these issues, participant contact registries can be instrumental in accelerating the pace of research on ID.
We thank all the registry families for their dedication to advancing research in ID. We thank Kimberly Bowens and Shika Mukkamala for their help with the registry survey. Grants HD055345 and HD055345-S1 supported the registry, the registry survey, and the writing of this article.
Frances A. Conners (e-mail: firstname.lastname@example.org), University of Alabama, Box 870348, Tuscaloosa, AL 35487-0348, USA; B. Allyson Phillips and James C. Hamilton, University of Alabama; Jennifer D. Rhodes, Stigler Health and Wellness Center.