Capturing attitudes towards research and data sharing in down syndrome (CARDS-DS): Piloting a novel parent-report measure

Abstract

Open science initiatives aim to accelerate research through data sharing. While prior research has explored public attitudes toward genomic data sharing, perspectives on sharing other data types, such as neuroimaging data, remain largely unexplored. To address this gap, we developed the CARDS-DS (Capturing Attitudes toward Research and Data Sharing in Down Syndrome) questionnaire, a novel survey designed to assess parental attitudes toward open-access data sharing in large-scale Down syndrome (DS) research. CARDS-DS items were adapted from existing surveys or newly written to fit the context. We conducted interviews to refine the survey items with 14 parents of infants with DS enrolled in a longitudinal neuroimaging study. Responses were analyzed using a structured qualitative coding framework and informed modifications to the final questionnaire. The finalized 35-item CARDS-DS survey encompasses five domains: (I) benefits of research participation, (II) concerns about participation, (III) attitudes toward data sharing, (IV) decision-making in research, and (V) access to research results. Parents in this pilot study expressed strong intrinsic motivation to participate in research, citing benefits for future generations. Most were comfortable sharing medical and behavioral data, but expressed concerns about videos, photographs, and genetic data due to privacy risks and potential misuse. Trust in researchers played a critical role in shaping parental attitudes. In future work, CARDS-DS can serve as a tool for assessing attitudes of large samples of participants toward data sharing in DS research, and has potential to be modified for use with other research populations.

2023 was the Year of Open Science, marking a national push in the United States to require public accessibility to the products of federally funded research (The White House, 2023). This decade has also seen the National Institutes of Health (NIH (Jorgenson et al., 2021a)) and other funders (Patient-Centered Outcomes Research Institute, 2023) increasingly supporting large-scale data collection efforts associated with open-access databases which can be mined by other researchers (and in some cases, members of the public) for secondary data analysis (Jorgenson et al., 2021b). An example of such an initiative is the Down Syndrome Cohort Development Program (DS-CDP), recently renamed to the INCLUDE Collaboration for Down Syndrome Progress. This is an NIH-funded effort that will enroll thousands of individuals with Down syndrome (DS) and collect health information, biological samples, brain imaging, and behavioral assessment data that will be subsequently de-identified and made publicly available (Press Office, 2024). Recruitment for DS-CDP projects is expected to begin in 2026.

Participants in studies like the DS-CDP provide broad consent for an open-ended range of research uses and widespread data sharing (Grady et al., 2015). Prior studies have suggested that participant willingness to enroll in research is relatively unaffected by the use of broad consent and open data sharing, with broad consent often preferred over tiered or study-specific consent (Garrison et al., 2016; Sanderson et al., 2017). Research on attitudes towards genomic data sharing has found that while both parents and adult participants appreciate the altruistic goals of data sharing, parents tend to be more restrictive in data release decisions and concerned about unknown future risks to their children (Berrios et al., 2024; Burstein et al., 2014; Halverson & Ross, 2012). Lower trust in researchers, privacy concerns, perceived risks outweighing benefits, and unmet informational needs have each been independently linked to reduced parental willingness to allow their children to participate in a biobank (Antommaria et al., 2018). One study conducted since the implementation of NIH's new data management and sharing policy found demographic differences in how individuals responded to the policy, with a higher percentage of Black participants indicating decreased willingness to participate in research with data sharing requirements in place (Niño De Rivera et al., 2024).

In anticipation of the DS-CDP launch, we developed the CARDS-DS (Capturing Attitudes toward Research and Data Sharing in Down Syndrome) questionnaire, a novel parent-report measure designed to capture the perspectives of families participating in longitudinal DS research. While prior studies have examined general public or researcher attitudes toward genomic data sharing, little is known about how parents of children with DS perceive data sharing, particularly in the context of both genomic and non-genomic data, and open-access policies. This gap limits our understanding of how to design responsible data sharing frameworks for DS research, which is particularly relevant during the current era of open science as researchers are increasingly in the position of discussing data sharing policies during the informed consent process with participating families.

To address this need, this pilot study employed a survey development approach called cognitive interviewing to refine CARDS-DS items (Kamp et al., 2018; Wolcott & Lobczowski, 2021). Cognitive interviewing involves an interviewer asking a survey respondent to “think aloud” and share what they are thinking as they read and respond to survey items (Drennan, 2003), and is a widely used method for pretesting survey items during instrument development (e.g., Opel et al., 2011). Findings from this study led to the development of CARDS-DS, a measure that could be used to inform data-sharing policy discussions for DS research, including within the DS-CDP. We additionally report on the results from open-ended questions that parents were asked during the cognitive interview process.

1. Methods

1.1. Pilot testing within the Infant Brain Imaging Study - down syndrome (IBIS-DS)

The draft instrument was piloted and refined with parent participants enrolled in Infant Brain Imaging Study-Down Syndrome (IBIS-DS; R01HD088125; Marrus PI), a multi-site longitudinal MRI study enrolling infants with DS between 6 and 12 months with longitudinal assessments through 24 months of age. Participation in IBIS-DS included collection of behavioral, electronic medical records (EMR), electroencephalogram (EEG), magnetic resonance imaging (MRI), and genetics data. Deidentified data from IBIS-DS are mandated by the NIH to be deposited in the INCLUDE Data Hub, an NIH-managed open-access database. The IBIS Network has been selected as one of five data collection teams for the broader NIH DS-CDP initiative, which aims to develop a common protocol of core measures applicable to individuals with DS across the lifespan to clarify the natural history of DS, including common co-occurring conditions, the range of individual differences in DS, and experiences and factors that influence outcomes in DS (IBIS-DS; R01HD088125; Marrus PI). An overarching goal of this effort is to engage with the DS community to develop a foundation of lifespan knowledge of DS to inform the development of new therapies. As a contributor to this data collection, the IBIS Network will provide behavioral and neuroimaging data from infants using a similar protocol to the original IBIS-DS infant study. In addition, data collection will involve other elements of the common protocol, such as collecting biospecimens for genetic, proteomic, and metabolomic analyses, to be banked in the INCLUDE biorepository.

1.2. Participants

Parent participants were eligible to participate if their infant was enrolled in the IBIS-DS study. Inclusion criteria for infants with DS included a parent-report diagnosis of full Trisomy 21 or an unbalanced Robertsonian translocation, which results in an extra copy of the long arm of chromosome 21 and is phenotypically equivalent to Trisomy 21. Exclusion criteria included: a diagnosis or physical signs of known genetic conditions known to affect growth or development except for DS (Fragile X syndrome, neurofibromatosis, etc.), birth weight <2000 g, gestational age <34 weeks, history of significant perinatal complications such as known prenatal exposure to neurotoxins (e.g., heavy metals such as lead or substances of abuse, such as opiates), maternal gestational diabetes requiring medication, or perinatal asphyxia, contraindication for MRI, and families whose primary language is not English, due to requirements for cognitive assessments. Significant medical conditions such as congenital cardiac abnormalities, perinatal stroke, or severe gastrointestinal malformations were also a criterion for exclusion, except for conditions commonly associated with DS.

At the time of parent participation, infant participants had completed at least one in-person data collection visit for IBIS-DS, including an evening MRI scan conducted during natural sleep. An IBIS-DS study coordinator contacted eligible parent participants and invited them to participate in this CARDS-DS pilot. A total of 14 individual parents participated from April to July 2024. CARDS-DS surveys were administered online via REDCap electronic data capture tools hosted at the University of Washington (Harris et al., 2009, 2019). Cognitive interviews were conducted by phone, audio recorded, and transcribed using the TranscribeMe! transcription service. Parent participants were compensated with a $50 electronic gift card for their time. All study procedures were approved by the University of Washington Institutional Review Board (Protocol #: STUDY00008989, approved 02/29/2024.)

1.3. Survey and interview procedure

We developed an initial set of survey items and used a cognitive interviewing procedure to refine the items. Cognitive interviewing is a systematic method used to evaluate and improve survey questions in collaboration with survey respondents by identifying potential sources of misunderstanding or bias (Miller et al., 2014; Wolcott & Lobczowski, 2021). Either concurrently or retrospectively, participants are asked to describe their understanding of each item, the mental processes they used to arrive at their answer, and any related metacognitions (e.g., social desirability; Balza et al., 2022). “Think aloud” prompts are given to encourage participants to speak their thought processes aloud as they describe how they understood the question and selected a response (O'Callaghan et al., 2025).

The initial survey was modeled after the survey instrument developed by Antommaria et al. (2018); see Results section for additional detail on survey development and refinement. Additionally, eight demographic questions were included at the end of the survey (provided in Supplemental Table 2). Participants completed the initial version of the survey on their own via a REDCap link while on the phone with a study team member (AM or KM). Immediately after participants submitted their survey responses, the interviewer began administering the cognitive interview over the phone.

The cognitive interview followed a semi-structured interview guide with questions divided into three sections (Supplemental Table 1). First, participants were asked to provide their overall feedback on the survey (e.g., “Do you think the survey is too long?”). Second, they were asked about general comprehension (“Were any terms used poorly defined or confusing?). Third, each participant was asked to provide a “think aloud” response for three to five individual survey items as time allowed. Each survey item was discussed as a “think aloud” with at least two participants to ensure broad coverage of the instrument.

Finally, all participants were asked to elaborate on their perceptions of the benefits and risks of data sharing, and expand upon their reported comfort levels with sharing different data types (see Table 1). Below we report on the interview data related to the topics that were the focus of the additional interview questions: 1) perceptions of risks and benefits of data sharing, and 2) reported comfort levels with sharing different data types. We do not report quantitative survey results given the draft status of the administered items and the small sample size.

Table 1.

Qualitative interview open-ended questions asked of all participants.

Data Sharing Probes

For questions 12–18, I noticed that you answered [the same/different] levels of comfort for the different types of data. Can you tell me more about that?

How might you describe the benefits of sharing data in a database like the INCLUDE Data Hub?

How might you describe the risks or downsides of data sharing?

Question-Specific Think-Alouds

How did you go about answering this question? Tell me what you were thinking.

Optional probe: How easy or difficult did you find this question to answer? Why do you say that?

Optional probe: How would you have answered this question if it had been reworded in this way?

1.4. Qualitative content analysis

We used an atheoretical analytic approach—qualitative content analysis—which is common in empirical bioethics and health sciences research. This is an appropriate analysis method when the informational content of the interviews is of primary interest. As an interdisciplinary co-author team, with training in bioethics, clinical psychology, developmental biology, radiology, psychiatry, and public health genetics, we approached these interviews in an exploratory manner, without a priori assumptions or the intention to generate or test theory, in the hopes that parent responses would provide insights into how parents perceived the CARDS-DS survey questions for the purposes of item refinement.

Transcripts of recorded calls were coded using Atlas.ti (version 24) coding software. We developed an a priori codebook based on the cognitive interview questions. Through an iterative process, we refined the codebook by adding subcodes as needed to better capture emerging themes. A primary coder (AM, BC) conducted the initial coding pass. A secondary coder (BC, AM) then reviewed the codes, and any discrepancies were resolved through discussion to ensure consistency and accuracy.

After completing the coding process, we revisited transcript segments that were coded and derived both quantitative and qualitative summaries. Quantitative summaries were derived by counting the number of transcripts in which a code or concept was present. Qualitative summaries were derived via close reading of coded segments and, in some cases, secondary coding and reorganization, followed by descriptive and interpretive summaries written as memos (Miles & Huberman, 1994). Coded segments that contained direct suggestions for modifying survey items were brought to the research team for discussion, and we made modifications to survey items that parents found unclear or confusing in the final version of the survey (detailed in the next section).

2. Results

2.1. Survey development and modifications

The final survey consisted of 35 items across five content domains modeled after the survey instrument developed by Antommaria et al. (2018). These domains included (I) potential advantages of participating in research, (II) potential concerns about participating in research, (III) attitudes towards data sharing, (IV) information and decisions about research, and (V) learning about research results (Table 3). Of the 35 final items, 12 were copied or modified from existing survey instruments (Antommaria et al., 2018), while 23 were newly developed.

Table 3.

Final version of the CARDS-DS survey instrument after piloting and revision based on participant feedback.

Section I: Potential advantages of participating in research
Please rate how strongly you agree or disagree with the following statements:
1*	I feel that I am helping future generations of children with Down Syndrome.	Strongly Agree, Agree, Neutral, Disagree, Strongly Disagree
2*	I feel that this research could help my family directly.
3*	I feel that this research could lead to a brighter future for my child.
4*	I feel that this research could help doctors take better care of children with Down Syndrome.
5*	I am interested in and often read about Down Syndrome research.
6*	I worry about the privacy of my child's personal and health information.
7*	I worry about how researchers will use my child's personal and health information.
8*	I worry about research being done in the future with my child's data that I did not want to take part in.
9*	I worry that someone might make money using my child's data and health information.
10*	I would want to know who makes sure that my child's data and health information is used in the right way.
Section II: Attitudes towards Data Sharing
Please rate how strongly you agree or disagree with the following statements:
11a	The INCLUDE Data Hub is a database managed by the National Institutes of Health (NIH) in which all data from Down Syndrome research funded by the NIH must be included. The information in this database “deidentified”, meaning it cannot be linked back specifically to you or your child. Anyone who registers for an account can access this database. Please refer to this definition while answering the following questions. I feel that I understand what the INCLUDE Data Hub is.	Yes, No
11b	Researchers studying Down Syndrome from other institutions will have access to and potentially use my child's data for their own research.	Very Comfortable, Somewhat Comfortable, Neutral, Somewhat Uncomfortable, Very Uncomfortable
12	My child's medical history being shared through the INCLUDE Data Hub.
13	My child's behavior and eye-tracking data being shared through the INCLUDE Data Hub.
14	Videos and photographs of my child being stored in the INCLUDE Data Hub.
15	My child's MRI data being shared through the INCLUDE Data Hub.
16	My child's EEG data being shared through the INCLUDE Data Hub.
17	My child's genetic data being shared through the INCLUDE Data Hub.
18	My own/parental genetic data being shared through the INCLUDE Data Hub.
19	Information about my family, such as our demographics and socioeconomic status, being shared through the INCLUDE Data Hub.
20	How important is it for you to be involved in deciding whether your child's research data is shared in the INCLUDE Data Hub?	Extremely Important, Important, Not Important
Section III: Information and Decisions about Research
Please rate your comfort with the following:
21	I understand this study and what I have consented to by participating.	Strongly Agree, Agree, Neutral, Disagree, Strongly Disagree
22	I would like more information on this study.
23*	I would want to know the types of future research my child's data and health information would be used for.
24*	I would want to know what would happen if a researcher misused my child's health information.
25	It is important to me that my child understand that they are part of a research study.
26	It is important to me that my child understand that their data will be stored and used indefinitely in the INCLUDE Data Hub.
27	As my child gets older, it is important to me to include them in decisions about participating in research.
28	As my child gets older, it is important to me to include them in decisions about how their research data is shared and used.
Section IV: Learning about the Results of Research
Please rate how strongly you agree or disagree with the following statements:
29	I want to know the results of this research study.	Strongly Agree, Agree, Neutral, Disagree, Strongly Disagree
30	I want to know the results of other research that is done in the future with my child's data in the INCLUDE Data Hub.
31	I would like to learn about the results of this research through an email.
32	I would like to learn about the results of this research through a phone call.
33	I would like to learn about the results of this research through a live or recorded webinar.
34	If researchers learn things about my child's health that are irrelevant to the study or were not being tested for, I would still want to know these results.
35	If researchers learn things about my own health or others in my family that are irrelevant to the study or were not being tested for, I would still want to know these results.

Survey items borrowed from previously published instruments are indicated with an asterisk (*).

14 individual parents participated in the cognitive interview pilot testing, with their demographic characteristics presented in Table 2. On average, the survey took 4 min and 46 s (range: 3:12 – 10:10) to complete. While one participant felt the survey was too long, all others stated that the length was appropriate. The cognitive interview process took an average of 21 min and 8 s (range: 11:21 – 32:50).

Table 2.

Demographics of parent participants.

Gender			Education Level
Female	12	86%	Post-graduate	6	43%
Male	1	7%	College graduate	5	33%
Prefer not to answer	1	7%	Some college	2	14%
			High school graduate	1	7%
Race			Annual Household Income
White	11	79%	$50–100,000	3	21%
Asian	1	7%	$100–200,000	6	43%
Black or African American	1	7%	> $200,000	5	36%
American Indian/Alaska Native	1	7%
Prefer not to answer	1	7%
Ethnicity			Prior research Involvement?
Not Hispanic or Latino/a	12	86%	Yes	7	50%
Hispanic or Latino/a	1	7%	No	7	50%
Prefer not to answer	1	7%

Based on participant feedback, one survey item was added, and six were modified. The new question was introduced to present the definition of the INCLUDE Data Hub as its own question (Table 3, question 11a), in response to participant feedback that including the definition as part of the survey header (as in the original version) was easy to overlook. Additionally, wording adjustments were made to several questions at the conclusion of the pilot study to enhance clarity. All 14 parents affirmed that the CARDS-DS instrument effectively captured their attitudes toward DS research and data sharing. Table 3 contains the final version of the survey items after revisions based on parent feedback.

2.2. Attitudes towards open-access data sharing

In response to the open-ended question (“How might you describe the benefits of sharing data in a database like the INCLUDE Data Hub?”), a commonly cited benefit was the need for a large dataset to enhance the impact of DS research. As one parent put it,

“So … for us … the benefit of sharing her personal health history and health data in these databases where … her identity … is classified as a number … the benefit of sharing that for future generations and future research outweighs the risk of how that data may impact us as a family or impact her.”

(P3)

Eight parents emphasized that broad data sharing would improve research quality and generate more reliable findings. Most parents (8/14) acknowledged that the benefits would take time to accrue, and that the research findings would likely not directly help their child or family.

Trust in researchers emerged as a key factor in parental attitudes of data sharing. Ten parents stated that they trusted researchers to use the data responsibly, with three explicitly stating that they did not believe researchers would be capable of misusing the data even if they intended to, due to the nature of the data collected.

In response to the open-ended question “How might you describe the risks or downsides of data sharing?”, the most frequently mentioned disadvantage was the potential for a data breach, mentioned by nine parents. However, four of these parents were unsure how de-identified data could be misused even if leaked. Five parents expressed worry about the potential for data misuse.

The potential for the data to be used to either dispel or promote ableism or stigma against people with DS was mentioned spontaneously by parents. Multiple parents discussed the potential implications of the data in the context of prenatal testing and potential for elective termination of DS pregnancies. For example, one parent described the potential benefits of shared data:

“I feel like if people were more knowledgeable of Down syndrome and understood it better, then maybe that fear wouldn't have been there … and it could help future parents, you know, during their pregnancy.”

(P10)

Other parents feared that analyses of the resulting data could lead to negative social consequences for individuals with DS.

”The risks could be that someone, you know, interprets [the data] in the opposite way and says, you know, “Look at this limited brain development. And children with Down syndrome, you know, aren't developing as well, and there aren't therapies out there … So therefore we should just give up.”

(P3)

2.3. Comparative attitudes towards sharing of specific data types

Parents were asked to elaborate upon the similarities and differences in their responses to the survey questions about comfort with sharing different data types (questions 12–18). Nearly all parents described feeling comfortable with sharing their child's medical history, with two parents explicitly stating that this type of data was essential to the study. Similarly, all parents were comfortable with sharing behavioral and eye-tracking data, and all but one were comfortable with sharing their child's MRI and EEG data. However, two parents expressed some hesitation about MRI and EEG data, describing these as more intrinsic to their child's identity than other data types.

Concerns were most pronounced regarding the sharing of videos and photographs. Specific concerns included potential misuse of videos and images through artificial intelligence (e.g., “deep faking,” as cited by one parent), risks associated with data breaches (three parents), and the belief that videos and photographs were more personally identifiable (three parents). Two parents drew comparisons to social media, with one of them noting:

“I thought of it, like, from a social media perspective, where she's, like, [not] old enough that she can say whether or not she wants photos and videos of herself being shared to people that she doesn't know”

(P1).

Genetic data sharing elicited mixed responses. While most parents were comfortable sharing their child's genetic data, they acknowledged concerns about traceability in the event of a data breach. In contrast, there was greater discomfort regarding the sharing of parental genetic data. Three parents stated that they were comfortable with their child's genetic data being shared but not their own, with two explaining that their genetic data seemed unnecessary to the study, whereas their child's genetic data was directly relevant.

Regarding demographic data, most parents were comfortable with sharing this information, and two specifically highlighted its importance in fostering diversity and inclusivity in DS research. However, two parents expressed discomfort, citing concerns that demographic data might be used to discriminate against certain groups rather than advance research. As one participant put it:

“I guess it's a matter of how is someone using this data to try and prove a point that further divides people down the road, you know, whether that's by race, socio-socioeconomic status … just to use it in … an improper way that can further divide people.”

(P7)

When reflecting on their decision-making processes, parents generally expressed greater reluctance about sharing data that felt more intrinsic to their child's identity. Conversely, the more anonymous they perceived a data type to be, the more comfortable they felt sharing it. Nine parents stated that their willingness to share specific data types was ultimately dictated by their belief that the data were necessary for achieving the study's research goals. Additionally, seven parents reported that regardless of their attitudes towards data sharing, their consent to participate in the study implied consent to data sharing, with five specifically stating that control over the data now rested with researchers rather than themselves. As one parent noted:

“I feel like you guys are the ones that are doing the research, so … you guys would decide if it's important to be … used or included in the Data Hub or not …. I mean, basically, if I'm already agreeing to the research, then you already have my permission to include it”

(P10).

3. Discussion

In this study, we developed and piloted the CARDS-DS (Capturing Attitudes towards Research and Data Sharing in Down Syndrome) survey instrument, a novel parent-report measure designed to assess attitudes toward research participation and data sharing among families involved in DS research. CARDS-DS integrates both newly-developed survey items and existing survey items used in prior studies on open-access data sharing (Antommaria et al., 2018). Through cognitive interviewing, we refined the instrument to ensure clarity and relevance to the target population. The final version of CARDS-DS consists of 35 items spanning five content domains and takes approximately 5 min to complete.

Trust in researchers played a crucial role in shaping parental attitudes toward data sharing in this study. Many parents expressed confidence that researchers would use the data responsibly, with some indicating that they did not believe data misuse was a realistic concern. This finding mirrors other published studies indicating that researchers and public institutions are trusted users of data (Guillemin et al., 2018). For example, a similar attitude was reflected in a prior study comparing the attitudes of adolescents and parents of adolescents enrolled in a genomic research repository – both the parents and the adolescents expressed high levels of trust in researchers regarding data use and data sharing (Berrios et al., 2024). Another prior study found that government agencies and public institutions were the most trusted users of health data (Lysaght et al., 2021). In our study the most common reason for supporting the sharing of their child's data was the potential benefit to other children, which mirrors the findings of a prior study done on parental perspectives towards a pediatric biobank (Brothers & Clayton, 2012). The most common concern was that the data could be used to worsen ableism and stigma against people with DS—an important consideration for investigators to consider when conducting research within the DS community.

Parents interviewed in this study exhibited relatively high levels of comfort with sharing most data types, particularly those perceived as essential for achieving the study's research objectives, such as medical history, behavioral data, and neuroimaging results. However, a key finding was that parental comfort levels varied depending on the perceived sensitivity of different data types. Data that felt more intrinsically linked to a child's identity, such as videos, photographs, and genetic information, elicited greater concerns about potential misuse and privacy breaches. These concerns were especially pronounced regarding video data, with some parents referencing the potential for misuse through emerging artificial intelligence technologies. While most parents were willing to share their child's genetic data, they expressed more hesitancy about sharing their own genetic data, viewing it as less relevant to the study. Similarly, a previous study on hypothetical data-sharing practices in developmental science found significant hesitancy regarding genetic data, with parents being significantly less comfortable sharing their child's genetic data compared to hormone levels, eye-tracking, brain imaging, and physiological data (Begum Ali et al., 2023).

These qualitative findings provide additional context to the quantitative responses obtained through the CARDS-DS, a novel parent-report measure refined through cognitive interviewing. Additional data collection with CARDS-DS with larger samples may reveal the general-izability of the attitudes towards data sharing captured in this pilot study. A few limitations of this study are worth noting. First, cognitive interviews were conducted with a small sample (n = 14) of participants were mostly white, middle-class females with secondary education. Additionally, all participants were parents who had already consented to enroll their child in a research study involving open-access data sharing. As a result, their attitudes may be more favorable toward research and data sharing than those of the broader DS community. Future research may consider examining the attitudes of parents who have yet to take part in research, as their views may differ from those who are already enrolled in research studies with their child.

Future research will collect data on the CARDS-DS instrument to determine attitudes towards data sharing from a larger, more diverse sample of families of children with DS. In addition, future research could determine whether attitudes towards data sharing differ across neurodevelopmental disorder groups. By design, the wording of items on CARDS-DS can be easily modified to allow for future applications of the items to other pediatric research populations (e.g., autistic children), although careful adaptation and validation of the instrument in other groups will be needed to ensure usability in other populations.

4. Conclusion

The CARDS-DS survey is a tool developed for capturing parental attitudes toward data sharing in DS and other neurodevelopmental disability research. By integrating this survey instrument into large cohort development efforts such as the NIH DS-CDP, we can assess parental attitudes toward research participation and data sharing on a larger scale. Understanding family attitudes towards data sharing could help with refining recruitment and consent materials and, by extension, enhance transparency and trust between researchers and participating families. Research teams are poised to play a central role in explaining and discussing open access policies with research participants, and our hope is that this short survey tool can provide entry into these conversations. Furthermore, data from surveys like CARDS-DS can inform research network policies on open-access data sharing, ensuring that the perspectives of enrolled families are actively considered in shaping research practices. Ultimately, understanding participant attitudes towards data sharing can inform more ethical and effective data-sharing practices in neurodevelopmental disabilities research.

Appendix A. Supplementary data

Supplementary data to this article can be found online at https://doi.org/10.1016/j.ssaho.2026.102673.

Data availability statement

The semi-structured interview guide is available in Supplementary materials. The full codebook used for analysis is available from the corresponding author on reasonable request. Audio recordings are not publicly available to preserve participant privacy. De-identified copies of transcripts are available from the corresponding author on reasonable request.