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  Research participation involves a few steps to ensure that our studies are appropriate for an individual or family and that our lab has the information required to properly include them in our ongoing research projects. Travel to Boston is not required.
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  What Are the Steps?

We are routinely contacted by individuals, parents and health care providers about enrolling children and adults into our genetic studies. The steps of joining our studies include screening, providing informed written consent and sample collection.  Participation in our research is voluntary.

To send us an inquiry, you may fill out the form on our Contact Information webpage or send us a completed Walsh Research Inquiry Form by email, postal mail or fax.

>Walsh Research Inquiry Form

SCREENING

Once we receive a research inquiry, we will ask for the opportunity to review important medical information, such as brain imaging, some specific original medical records when possible, and a medical history summary. This helps us confirm that our studies are appropriate for an individual or family.

Brain Imaging A review of brain MRI images is essential to this screening process for most of the conditions that we study. The brain imaging is usually a full set of postnatal MRIs sent to us on a CD. We can also receive MRI film sheets and return these after our review.

Medical Records A review of certain medical records helps us understand an individual's diagnosis and medical history and thus how they might relate to the conditions that we study in our lab. Copies of the notes from appointments with neurology and genetics professionals, as well as the results of any genetic testing and EEG reports are requested as they apply to each individual. We might ask for additional records before or after enrollment on a case by case basis.

To assist individuals, families and their doctor offices in having copies of MRIs and medical records forwarded to us for review, a Medical Record Release Form is provided below. You can complete this form and send it to the hospital(s) or other doctor's office(s) holding the medical records requested. This gives them your permission to send the requested records to us. Space does not permit us to obtain and hold onto the full medical record of all individuals interested in our studies and so we request only those relevant to our research.

>Medical Records Release Form 

Family History Obtaining a detailed family history is an important part of the enrollment process as it helps us to completely characterize the nature of the condition, recognize how it is inherited in a family and identify other potential research participants. A family history might be requested over the phone or in person. In either case, it is helpful to have some written information in advance and a Family History Form is provided to facilitate this. Please complete this form and send it to us by email, fax or mail along with the other supporting research documents.

>Family History Form

Medical History Summary We ask that individuals, parents and/or a referring doctor complete our Clinical History Summary Form to provide an overview of the participants clinical and family history.

>Clinical History Summary Form

We will contact you once we receive your inquiry and as any records arrive. Given the number of inquiries we receive and the process involved, a few weeks are needed to review all of the requested information after it arrives in our lab. We will then contact you, the family, or the doctor's office with options for research participation.

Any information we share as a result of our review of MRIs and/or medical records is for the purpose of clarifying research eligibility and is not intended to replace the care or advice provided by a treating physician. We welcome contact from families and health care providers regarding the status of their review at any time.

INFORMED CONSENT AND ENROLLMENT

Once we have determined that our studies are appropriate for an individual or family, we can proceed with obtaining written informed consent and then biological samples for research participation. This can be coordinated at Boston Children's Hospital Boston (BCH) or with the assistance of a health care provider at another institution or office outside of Boston.

Informed Consent Participation in our research is voluntary and providing informed consent is an important and essential step towards research participation. The consent process allows us to tell potential participants about the goals of our research and clearly explain what is requested of them. Our research efforts, privacy practices and potential study outcomes are discussed, and time is given to address any questions or concerns the individual or family might have. A copy of our current Research Consent Form is provided here for reference and review only.

>Research Consent Form 

Enroll at CHB Research enrollment can be arranged to occur on the same day of a scheduled clinical visit to BCH or for the specific purpose of study enrollment. The Clinical Translational Study Unit (CTSU) at BCH is used for visits for research enrollment only. On the day your appointment, you would meet with a study coordinator to discuss our research consent form in detail, obtain any additional information needed, such as a family or and medical histories, and collect biological sample(s), usually blood or saliva.

Enroll Outside of Boston Research enrollment can be arranged without a trip to Boston. In this case, we would provide all of the materials necessary, including the consent documents, sample containers, and supplies needed for returning all materials back to us at no cost to the participant(s). Prior to collecting and shipping samples, a study coordinator must speak with the prospective participant(s) by telephone to review the consent form in detail. Blood or saliva collection would then be arranged with the assisting health care provider and sent to our lab at our expense.

The forms that follow are provided to assist in the process of enrolling in our research from outside of Boston and should be completed and send to our lab along with any research samples.

Enrollment Reference Sheet and Checklist This form outlines the steps and items needed for research enrollment, including our shipping information.

Blood Draw Sheet This form is provided if needed to facilitate blood sample collection.

Sample Submission Form This form should be completed and accompany the shipment of any samples so that our lab is fully and clearly informed upon their receipt.

Again, participation in our research is voluntary and proper screening and informed consent must take place before the collection and receipt of research samples.

REQUIRED SCREENING FORMS

Walsh Research Inquiry Form
Medical Records Release Form
Family History Form
Clinical History Summary Form


REQUIRED SAMPLE SUBMISSION FORMS

Research Consent Form
Enrollment Reference Sheet & Checklist
Blood Draw Sheet
Sample Submission Form

 
 
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