Chapter 10: Recruiting and Retaining Participants in the Registry

1. Introduction

Recruitment and retention of participants are essential elements in the design and operation of a registry. Registries are often intended to be representative of a certain population of patients and reflective of the practices of certain providers and geographic areas. The problems commonly associated with clinical studies — such as difficulties with patient enrolment, losses to follow-up, and certain sites contributing the majority of patients — can also have profound consequences on validity of registry data. When registry patients are not representative of the target population, the value of the results is diminished. For example, in regard to policy determinations, the enrolled sites or providers must be representative of the types of sites and providers to which the policy determination would apply in order for the results of the registry to be generalisable. Differences in how effectively sites enrol or follow patients can skew results and overly reflect the sites with the most data. This oversampling within a particular site or location must also be considered in sample size calculations. If the sample size of a key unit of analysis (patient, provider, or institution) is not sufficient to detect a clinically important difference, the validity of the entire registry is weakened. (See Chapter 3 and Chapter 13.)

Well-planned strategies for enrolment and retention are critical to avoiding these biases that may threaten registry validity. Because registries typically operate with limited resources and with voluntary rather than mandatory participation, it is particularly important to balance the burdens and rewards of participation in the registry. The term “voluntary” in this context is intended to mean that participation in the registry by either providers or patients is not mandated (e.g., by the U.S. Food and Drug Administration), nor is participation required as a necessary condition for a patient to gain access to a healthcare product or for a provider to be eligible for payment for a healthcare service. Registries that are not voluntary have different drivers for participation.

In general, the burden of participation should be kept as low as possible, while the relative rewards, particularly nonmonetary rewards, should be maximised. As described in Chapters 2 and 5, minimising burden typically starts with focusing on the key goals of the registry.

Building participation incentives into a registry should also be included in the planning phase. A broad range of incentives — spanning a spectrum from participation in a community of researchers, to access to useful data or quality improvement benefits, to continuing medical education, to public recognition or certification, to payments or access to patients — have been used in registries. The ability to offer certain incentives (e.g., linking payment for a service to participation in a registry or access to patients) may be available only to certain registry developers (e.g., payers, licensing entities). Many registries incorporate multiple types of incentives, even when they pay for participation. Monetary incentives (e.g., from payers or sponsors) are very helpful in recruiting sites. However, because the payments should not exceed fair market value for work performed, registries cannot solely rely on these incentives. Many nonmandated registries have achieved success in recruitment and retention by providing a combination of ethical incentives that are tailored to and aligned with the specific groups of sites, providers, and patients that are asked to participate. (See Case Examples 21 and 22.)

2. Recruitment

Depending on the purpose of a registry, recruitment may occur at any of three levels: facility (e.g., hospital, practice, and pharmacy), provider, or patient. While recruitment at these levels is frequently part of a design to accrue a sufficient number of patients for sample size purposes, such as for a safety registry, the individual levels may also constitute potential units of analysis (and as such, may further affect sample size, as discussed in Chapter 3). As an example, a registry focused on systems of care that is examining both hospital system processes and patient outcomes might need to consider characteristics of the individual patients, the providers, and/or the places where they practice (i.e., clusters). If the question is about the practices of orthopaedic surgeons in the United States, the registry will be strengthened by describing the number and characteristics (e.g., age, gender, and geographic distribution) of U.S. orthopaedic surgeons, perhaps by citing membership data from the American Academy of Orthopaedic Surgeons. This will allow documentation of the similarities and differences in the characteristics of the surgeons participating in the registry compared with the target population. (See Chapter 3.)

2.1 Hospital Recruitment

A hospital or health system may choose to participate in a patient registry for many reasons, including the research interest of an individual investigator or champion, the ability of the hospital to achieve other goals through the registry (such as requirements for reimbursement, certification, or recognition), or the general interest of the institution in the disease area (e.g., specialty hospitals). Increasingly, external mandates to document compliance with practice standards provide an incentive for hospitals to participate in registries that collect and report mandatory hospital performance or quality-of-care data. For example, some registries enable providers to participate in the Centers for Medicare and Medicaid Services’ Merit-Based Incentive Payment System (MIPS). In these cases, hospital administrators may be willing to supply the staff time to collect these data without additional financial incentives from the registry sponsor, provided that registry participation meets the criteria of these external programmes. In other cases, participation in a quality monitoring or health system surveillance registry may be required by payers or governments for reimbursement, differential payments, or patient referrals under various programmes (e.g., centres of excellence programmes, pay-for-performance programmes). One particular example, CMS’s Coverage With Evidence Development programmes,¹ which may require participation in a registry for the centre or provider to qualify for payment for a procedure, can have a dramatic impact on registry participation. Registry participation requirements have existed for implantable cardioverter defibrillators for preventing sudden cardiac death in heart failure, for bariatric surgery, for positron emission tomography scan use in cancer, and for other procedures and devices. These requirements have rapidly resulted in high participation rates for registries meeting them.

The presence of quality assurance departments in U.S. hospitals provides an infrastructure for participation in many hospital-based registries, and these departments are therefore a natural target for recruiting. However, hospital size, service line (e.g., disease-specific centres), and competing activities may limit institutional interest. The American Hospital Association database provides a valuable resource for identifying hospitals by key characteristics, including hospital ownership, number of beds, and the presence of an intensive care unit.

Table 10-1 summarises the key factors for successful hospital recruitment and lists specific methods that might be used to recruit hospitals. While programmes need not incorporate all of these characteristics or use all of these methods, successful programmes typically incorporate several.

Table 10-1. Hospital recruitment

2.2 Physician Recruitment

A physician practice may or may not choose to participate in a voluntary registry for many reasons. As with hospitals, these reasons can include the research interests of the physician and the ability of the practice to achieve other goals through the registry (such as reimbursement or recognition). When deciding to participate, physicians often focus on several concerns:

• Relevance: Does the registry have meaning for the practice and patients?

• Trust: Are the registry leaders credible? Are the goals clearly stated?

• Risks: Will confidentiality be maintained? Are patient records secure?

• Effort: Will the amount of effort expended be fairly compensated?

• Disruption: Will participation disrupt workflow of the staff?

• Value: What benefits will be derived from participation? Will it improve the care provided? Will it enhance the evidence base for future practice?

Physicians who manage only a few patients per year with the disease that is the subject of the registry are less likely to be interested in enrolling their patients than physicians who see many such patients — unless the disease is rare or extremely rare, in which case the registry may be of great interest.

Because most registries are voluntary and physicians in nonacademic practice settings may have less infrastructure and staff available to enrol their patients, recruitment of representative physicians is a major challenge for registries that aim to compare physician practices across a full spectrum of practice settings. In general, community-based physicians are less well equipped than hospital-based or academic physicians to collect data for research studies because they work in busy practices geared to routine clinical care rather than research. To increase recruitment of nonacademic physicians, it can be helpful to clearly explain the purpose and objectives of the registry; how registry data will be used; how much staff time is required; and, specifically, that individual results will not be shared (except at the direction of the physician) or published, and that registry outcomes data will be released only in large aggregates that protect the identities of individual hospitals, physicians, and patients. In addition, any incentives should be clearly articulated.

Table 10-2 describes the key factors for successful physician recruitment and lists several methods that might be used for recruiting physicians.

Table 10-2. Physician recruitment

2.3 Vetting Potential Participants

Once potential hospital or physician participants have been identified, it is important to vet them to ensure that the registry is gathering the appropriate mix of data. Issues to consider when vetting potential participants include:

• Representativeness

• Hospital characteristics (e.g., bed size, geographic location)

• Physician characteristics (e.g., specialty training)

• Practice setting (health maintenance organisation [HMO], private practice)

• Ability to recruit patients

• Volume of target cases

• Internal resources

• Availability of a study coordinator

• Availability of Internet connectivity for studies with electronic data capture

• Prior performance, including reliability and accuracy of data entry

2.4 Patient Recruitment

Patients may be recruited based on the judgment of the physician who provides their care; the diagnosis of a disease; receipt of a procedure, operation, device, or pharmaceutical; membership in a health insurance plan; or membership in a group of individuals who have a particular exposure. Recruitment of patients by the physician who is providing their care is one of the most successful strategies. Since registries should not modify the usual care that physicians provide to their patients, there should be little or no conflict between their role of physician and that of participant in the registry. (See Chapter 7.) In addition, patients may see participation in the registry as an opportunity to increase their communication with their clinician. Another incentive for many patients is the feeling that they are contributing to the knowledge base of sometimes poorly understood and undertreated conditions.

While many registries recruit patients through a healthcare provider, some registries recruit patients directly. In this study design, patients are contacted via Internet, mobile applications, mailed surveys, telephone, face-to-face interview or other means and invited to participate. This method is most useful for registries in which patients can be reasonably good and complete reporters about the exposures and outcomes of interest and when recruitment through medical care providers is particularly challenging. For example, patients may be better reporters than medical care providers when the research questions concern personal habits, exposures, or quality of life. Patients may also feel comfortable reporting sensitive information (e.g., recreational drug use or sexual activity) for research purposes that they may be unwilling to share honestly with medical care providers.^2,3

Recruitment of patients presents different challenges, depending on the nature of the condition being studied. In general, patient recruitment plans should address the following questions:

• Does the plan understand the needs and interests of potential participants?

• Does the plan address patient recruitment issues and procedural challenges, including informed consent and explanation of risks?

• What are the patient retention goals? What is a reasonable follow-up period? What is a reasonable follow-up rate? When does reduced retention compromise validity?

• What, if any, patient incentives are offered, including different types of incentives and the ethical, legal, or study validity issues to be considered with patient incentives?

• What are the costs of patient recruitment and retention?

Table 10-3 summarises the key factors for patient recruitment and lists several specific methods that might be used for recruiting patients, grouped by the basic categories of patients at the time of recruitment.

Table 10-3. Patient recruitment

2.5 Partnerships To Facilitate Recruitment

Many agencies/organisations can assist in the recruitment of physicians and patients. These partners may have access to patients or their families and physicians who treat the condition, and they may lend credibility to the effort. These agencies/organisations include:

• Government agencies

• Physician professional associations or State medical associations

• Certifying boards (e.g., American Board of Neurological Surgeons)

• Patient advocacy groups (e.g., Muscular Dystrophy Association)

• Nonprofit foundations (e.g., Robert Wood Johnson Foundation)

• Industry (e.g., pharmaceutical companies)

• HMOs and other third-party insurance providers

2.6 Procedural Considerations Related to Recruitment

When developing a recruitment plan for a registry, consideration should be given to the procedural concerns that may be factored into potential participants’ decisions. These concerns include the roles and responsibilities of each party, the need and process for obtaining institutional review board (IRB) approval, and the management of patient and provider confidentiality.

The contract between registry sites and the sponsor or coordinating centre should clearly state the roles and responsibilities of the participants, the registry-coordinating centre, and the sponsor. If remuneration is being offered, the data-entry requirements that need to be fulfilled before payments are made should be stated. It is often helpful to explain to sites the concept of fair market value. Where the Health Insurance Portability and Accountability Act (HIPAA) applies, consideration should also be given to new requirements in the HIPAA Privacy Rule that prohibit a covered entity from disclosing protected health information in exchange for remuneration from the recipient of that information without the individual’s authorisation, subject to a number of exceptions (see 45 CFR 164.502(a)(5)(ii)). There is no specific formula (such as whether to separate start-up payments from per-patient payments), but total remuneration must reflect work effort for the specific registry. Some individual factors, ranging from location to specialty, may have a bearing on fair market value. It is also important to spell out which entity will have ownership of the data and how the data will be used.

The contract should clearly explain the registry policy regarding any necessary approvals. If review by an IRB is required, generic templates can be offered to participants to assist them in obtaining ethical and IRB approval. Because the costs of obtaining IRB approval are often substantial, it is essential that the contract with the participants clearly indicate which party is responsible for bearing this cost. If the registry developer believes that IRB or privacy board review or approval is not required or may be waived, then a clear rationale should be provided to the prospective participants. As discussed in Chapter 7, the research purpose of the registry, the type of entity that creates and maintains it, whether the Common Rule applies to the particular site, and the extent to which the data are individually identifiable largely determine which regulatory requirements apply. For example, for registries limited to certain purposes, such as quality improvement, institutions may not need IRB approval.⁴

Patient privacy and participant confidentiality should be addressed in the registry materials. Methods of ensuring patient privacy need to be clearly elucidated in all registry-related documentation. Case report forms and patient logs must be designed to minimise patient identification (such as by transmitting limited datasets rather than more identifiable information, if such information is not required to meet a registry objective).

The intended management of the confidentiality of participating providers should be explained in the contract. Mechanisms for protecting provider confidentiality, including Certificates of Confidentiality and Patient Safety Organisations, are discussed in Chapter 7. If third-party or public reporting is an intended component of the registry, the specific data to be shared, the level of the disclosure (e.g., hospital and/or physician level), and the permitted receiving entities need to be articulated and the control mechanisms explained.

3. Retention

3.1 Providers

Once hospitals and physicians are recruited to participate in a registry, retaining them becomes a key to success. The factors identified as important for recruitment are important for retention as well. A critical factor in retention is delivery on promises made during recruitment (e.g., that the burden of participation is low). By carefully pilot testing all aspects of the registry prior to full recruitment, there is less likelihood that problems will arise that threaten the registry’s reputation. Registries with an advisory board or steering committee can use this resource to help with retention (see Chapter 9). A visible and independent advisory board adds transparency and credibility, sets appropriate expectations among its peers on what to expect from a registry (e.g., compared with a clinical trial), ensures that the burden of the registry is minimised (or at least never outweighs its value to participants), and maintains the relevance and currency of the registry for the investigators. Ideally, advisory board members serve as ambassadors for the programme. The level of credibility, engagement, practicality, and enthusiasm of the advisory board can significantly affect provider recruitment and retention. For example, an advisory board whose clinical members are not themselves participating in the registry will have greater difficulty than a board with participating members in addressing the concerns of participating practices that invariably arise over the course of the registry. Including patients or patient advocacy organisation representatives on the advisory board also can support patient retention efforts. These representatives can provide feedback to the board on patient issues or concerns about the registry, and they can facilitate communication about the registry’s purpose and value to their peers or members.

Throughout the registry’s duration, communication from the data coordinating centre and the advisors, as well as community building, are important for strong retention. Early and continued engagement of the site champions or principal investigators is very important. Some registries use periodic face-to-face meetings of principal investigators from participating sites. When this approach is not economically feasible, well-planned online meetings can serve the same purpose.

Visibility of the registry at relevant national meetings can help maintain clinician awareness and sense of community, and regular demonstration of its value through presentations and publications reinforces the credibility of the registry to its participants. As the dataset grows, so too does the value of the registry for all participants, and regular updates on the registry growth can be important. Finally, enhancing site value through nonfinancial rewards can be particularly useful in retention, and the registry should continually seek to bring value to the participants in creative and useful ways.

Participation retention tools include:

• Websites

• Newsletters

• Telephone helplines

• Instruction manuals

• Training meetings

• Site audit/retraining visits

• Customer satisfaction/opinion surveys

• Regular data reports to stakeholders

• Presentations at conferences

• Regular reports to registry participants on registry growth and publications

• Ability of participating physicians to publish based on registry data (depending on the data access policy of the registry)

3.2 Patients

Retaining patients as active participants in registries with longitudinal follow-up is an ongoing challenge. Many factors need to be considered in developing a retention plan, including how long the patient is likely to return to the enrolling site. Patients enrolled in a primary care practice for a chronic illness can likely be followed in that practice for some time, although there should be a plan for how the registry will (or will not) address the issue of patients who transfer to unenrolled practices.

Different approaches are needed for patients who are unlikely to return to the medical care provider after an initial encounter or treatment, such as after a surgical procedure, medical device implantation or vaccination. Options include:

• enlisting site staff to reach out to patients beyond their standard interactions,⁵

• following patients directly through a central patient management centre,⁶ and

• linking to other data sources (e.g., claims data) to obtain key long-term outcomes data on patients who are lost to follow-up.

Retention plans, including contingencies, should be considered during registry planning, as they may require additional permissions (e.g., for direct contact) or data elements (e.g., for linkage).

Maintaining ethical incentives for patient participation (ranging from newsletters to payments) is also important for some registries (e.g., those that collect patient-reported outcomes data). Beyond planning for how to retain patients in a registry, it is important to track actual versus expected follow-up rates over time and to respond if rates are not meeting expectations. The resources available for patient retention efforts should also be clear. Follow-up rates can often be improved with more efforts, such as more attempts to contact the patient, but these efforts add costs and, at some level, will yield diminishing returns.

Additionally, some patient advocacy organisations may already have established networks or patient communities that contain members who are eager to participate in research programmes and who are likely to complete any studies in which they enrol. One example would be the Cystic Fibrosis Foundation. Patient-Powered Research Networks (PPRNs), established by the Patient-Centred Outcomes Research Institute (PCORI) as authorised by the Affordable Care Act, offer a myriad of patient registries, including Improve Care Now: A Learning System for Children with Crohn’s Disease and Ulcerative Colitis⁷ and the Multiple Sclerosis Patient Powered Research Network² to name just two examples. Patients within these networks/communities share their experiences with each other and may be interested in participating in patient registries. A patient organisation may even sponsor a registry among its community members, often referred to as patient-generated registries, which may be used for recruitment in studies organised by others. The various characteristics that motivate these patients to participate in a study may make them different from other patients with the disease or exposure of interest, and researchers must consider the generalisability of results. However, those motivating factors may not necessarily interfere with any biological relationships under study and may enhance retention.

Patient advocacy groups or individual patient partners who participate in the registry design may also be able to help design recruitment and retention procedures that appeal to potential participants. These partners may be better positioned to understand potential barriers from the patient perspective and, as trusted members of their respective communities, can ensure that the recruitment procedures are sensitive to the needs of the patients. These partners can be “champions” for the registry and serve as a liaison between researchers and patients, helping to identify and recruit patients and explaining the study to potential participants in lay terms. Their efforts can also include preparing and/or reviewing patient outreach materials, identifying more effective methods to increase awareness of the study in the community of patients, and developing new methods to recruit difficult-to-reach patients.^8-12

4. Pitfalls in Recruitment and Retention

Pitfalls abound in recruitment and retention. The most important of these pitfalls is the risk of selection bias. Targeting hospital-based or academic physicians to the exclusion of community-based physicians is tempting because the former are often more accessible and are frequently more open to involvement in, and more experienced in, research projects. Similarly, targeting high-volume practices or centres will improve efficiency of patient enrolment, but may not yield an adequately representative sample of care practices. If an advisory board or committee is used to help design the registry and aid in recruitment, there may be a tendency for advisors to recruit known colleagues or to target disease experts, when a wider range of participants may be necessary to provide the appropriate data to meet the research goals. Including representatives from the range of anticipated site types on the advisory board can be helpful.

Even with an appropriate mix of physician participants in a registry, biases in patient recruitment may still occur. For example, older and more seriously ill patients may be excluded because of challenges in enrolment and follow-up or poorer outcomes. From the outset, physicians involved in recruitment efforts need to be aware of the potential for bias, and they must understand the importance of adhering to well-delineated inclusion and exclusion criteria. They must also adhere to the registry’s enrolment strategy, which is typically designed to reduce this bias (e.g., sequential enrolment). In addition, overly demanding data collection requirements can affect retention. The schedule should be designed to obtain relevant data in a timely fashion without overtaxing the resources of patients and providers. It is also important to consider approaches that will distinguish patients who are lost to follow-up from those who have missing data for other reasons (such as a patient who missed a visit but is still in the registry).

Another major pitfall is confusing terminology. This can be a major problem when the registry is international. When designing training materials, instruction manuals, and questionnaires, it is critical that the language and terminology be clear and concise. Materials that are translated into other languages must undergo strict quality assurance measures to ensure that terms are translated properly (e.g., back translation).

References for Chapter 10

Case Examples

Case Example 21: Using Registry Tools to Recruit Sites

Description

The objective of the OPTIMIZE-HF (Organized Program to Initiate Lifesaving Treatment in Hospitalized Patients with Heart Failure) registry was to improve quality of care and promote evidence-based therapies in heart failure. The registry provided a comprehensive process-of-care improvement program and gathered data that allowed hospitals to track their improvement over time.

Challenge

The registry was designed to help hospitals improve care for patients hospitalised with heart failure. The objective was to accelerate the adoption of evidence-based guidelines and increase the use of the guideline-recommended therapies, thereby improving both short-term and long-term clinical outcomes for heart failure patients.

Proposed Solution

To increase compliance with guidelines, the registry team promoted the implementation of a process-of-care improvement component and the use of comprehensive patient education materials. They combined these materials into a hospital toolkit, which included evidence-based practice algorithms, critical pathways, standardised orders, discharge checklists, pocket cards, and chart stickers. The toolkit also included algorithms and dosing guides for the guideline-recommended therapies and a comprehensive set of patient education materials. The team engaged the steering committee in designing the toolkit to ensure that the materials reflected both the guideline-recommended interventions and the practical aspects of hospital processes.

In addition to the toolkit, the registry offered point-of-care tools, such as referral notes and patient letters, that could be customised for each patient based on data entered into the registry. The registry also included real-time performance reports that hospitals could use to assess their improvement on a set of standardised measures based on the guidelines.

Results

The hospital toolkit was a key component of the registry’s marketing campaign. Hospitals could view the toolkit at recruitment meetings, but they did not receive their own copy until they joined the programme. The toolkit gained credibility among hospitals because its creators included some of the most prominent members of the heart failure research and treatment community. Hospitals also actively used the reports to track their improvement over time and identify areas for additional work. Overall, the registry recruited 270 hospitals and met its patient accrual goal six months ahead of schedule.

Key Point

Nonfinancial incentives, such as patient education materials, toolkits, and reports, can encourage sites to join a registry. Incentives that also add value for the site by improving their processes or providing materials that they use frequently can aid retention.

For More Information

Fonarow GG, Abraham WT, Albert NM, et al. Organized Program to Initiate Lifesaving Treatment in Hospitalized Patients with Heart Failure (OPTIMIZE-HF): rationale and design. Am Heart J. 2004;148(1):43–51. PMID: 15215791. DOI: 10.1016/j.ahj.2004.03.004.

Gheorghiade M, She L, Abraham WT, et al. Systolic blood pressure at admission, clinical characteristics, and outcomes in patients hospitalized with acute heart failure. JAMA. 2006;296:2217–26. PMID: 17090768. DOI: 10.1001/jama.296.18.2217.

Fonarow GC, Abraham WT, Albert NM, et al. Association between performance measures and clinical outcomes for patients hospitalized with heart failure. JAMA. 2007;297:61–70. PMID: 17200476. DOI: 10.1001/jama.297.1.61.

Case Example 22: Using a Scientific Advisory Board to Support Investigator Research Projects

Description

The National LymphoCare Study is a large, prospective, disease-based registry designed to examine the disease presentation, treatment patterns, and clinical outcomes of patients diagnosed with follicular lymphoma. There are a number of open clinical questions about follicular lymphoma treatment, including whether anthracyclines should be used early in the course of disease, and whether there is a group of patients for whom observation (as opposed to active treatment) is the best choice, given the indolent nature of the disease. The registry recruited consecutive patients diagnosed with follicular lymphoma between March 2004 and March 2007 at participating sites in the United States and follows patients for up to 10 years. Specific outcomes of interest include overall response rate, progression-free survival, time to subsequent therapy, and overall survival for common frontline and subsequent therapeutic strategies.

Challenge

The National LymphoCare Study included a large number of community-based sites in addition to many academic sites. Many of the principal investigators at the community-based sites were interested in using the registry data to answer clinical questions, but they did not have sufficient research experience to design a research question, conduct data analysis, and share the results with the scientific community. One aim of the registry sponsors and scientific advisory board (SAB) was to facilitate research among the community investigators, both to increase interest in the registry and to increase the scope of research questions addressed using registry data.

Proposed Solution

The registry sponsors and the SAB developed a plan to allow investigators at enrolling sites to propose a question of interest; work with an SAB member, clinical scientists, epidemiologists, and biostatisticians to develop an analysis plan to answer the question; and present findings at scientific meetings. The plan was implemented in 2007, when the registry issued a call for research proposals to all participating investigators. The proposal outlined the types of data that were available at that point (e.g., descriptive data on demographics, initial treatments, etc.). Several community-based investigators sent in proposals, which the SAB then reviewed. The SAB selected the proposals that it felt were most appropriate for the available data and that answered the most valuable questions from a clinical standpoint.

The community investigator for each selected proposal was then paired with a member of the SAB to further develop the research question. This process included conference calls and emails to refine the question and the high-level analytic plan. Once the plan was ready, the investigator and the SAB member submitted the proposal and analytic plan to the registry sponsor. The sponsor provided support for analytic design and biostatistics. The investigator, in consultation with the SAB member, developed an abstract based on the results. Abstracts were reviewed by the full SAB before being submitted for presentation.

Results

The research programme was well received by community-based investigators, who have the opportunity to author their own research projects with mentoring from an experienced advisor. The SAB was also enthusiastic about working with community-based physicians on research methodology and adding to the scientific knowledge about this disease. The process resulted in several abstracts that were presented at scientific meetings.

Key Point

Community-based investigators who participate in a registry may be interested in pursuing research opportunities but may not have all of the necessary resources or expertise. By utilising an engaged advisory board, a registry can provide investigators with research opportunities, resulting in more publications and presentations based on registry data, and potentially more engaged investigators.

For More Information

Friedberg JW, Taylor MD, Cerhan JR, et al. Follicular lymphoma in the United States: first report of the National LymphoCare Study. J Clin Oncol. 2009;27:1202–8. PMID: 19204203. DOI: 10.1200/JCO.2008.18.1495.

Friedberg JW, Wong EK, Taylor MD, et al. Characteristics of patients with stage I follicular lymphoma (FL) selected for watchful waiting (WW) in the US: report from the National LymphoCare Study (NLCS). American Society of Hematology. 2007. Abstract 3315.

Link BK, Taylor MD, Brooks JM, et al. Correlates of treatment intensity for initial management of follicular lymphoma (FL) in the United States: report from the National LymphoCare Study (NLCS). American Society of Hematology. 2007. Abstract 2612.

Matasar MJ, Saxena R, Wong EK, et al. Practice patterns in the diagnosis of follicular lymphoma (FL): report from the National LymphoCare Study (NLCS). American Society of Hematology. 2007. Abstract 2613.

Nabhan C, Morawa E, Bitran JD, et al. Patterns of care in follicular lymphoma (FL): are minorities being treated differently? Report from the National LymphoCare Study (NLCS). American Society of Hematology. 2007. Abstract 367.